Can't take Plaquinil, any other suggestions?

General
1

Hello Folks,

I was at my Rheumatologist yesterday, and I asked him about Plaquinil. He said one of the side effects is blindness! Well, I'm blind in my left eye, so he doesn't want to risk it. I'm so glad he feels that way, but it leaves me wondering what else my options are.

Do any of you you have suggestions or tips about things you've tried that helped at all with your symptoms?

They have done a million tests, and apparently I have two kinds of Lupus, and they want me to have a gland biopsy to see if I have Sjorens(sp?) Syndrome. The doctor says all this will affect how they treat it. So I'm wondering if any of you have ideas about what might work to help with the symptoms (the flares mostly attack my gastrointestinal system, esophagus, stomach, intestines) and my joints. I don't usually have respiratory problems, lots of swelling in extremities etc. I get sores in mouth, nose, on my lips, in my ears and on my arms and legs.

Too many ridiculous things affect me to go into all of it. But I'd appreciate any info you may have on something that has been helpful to you, if there is anything.

Thanks, and everyone take care

2

benelysta, or prednisone. im on plaquinel, it hasnt effect my eyes yet other than schrojrens. im 43 and just got bifocals. but not due to plaquenel. hope this helps. your fellow lups sufferer, heather bodin\

3

I was on plaquanil for a year but had to stop bc of vision issues. Then tried pred and methotrexate(sp?) couldn't do that...now on varying degrees of prednisone and different meds for all the differnt symptoms...it is kind of This is the House that Lupus built: I take rquip for RLS and Two beta blockers for migraines from Hades, and a muscle relaxer if it gets real bad, Zoloft and a booster for my too too sad mood, that was caused by living in an unlivible swirl of chaos and general no-good-goes-on-here, and hydrocodone for when my constant pain soars way up to ten-nose-bleed zone, glipizide and metformin too to deal with the sugar raised by the previous two and meds for my ticker and some for my lungs (though the breathers are not constant like they are for some)---there are some I'm quite sure that I quite forgot, and there may be more added, more likely than not.

4

Well there should be different options that your Doctor knowes about. I myself an on 400mg of it. Thats a very common dose for it. I have had no issues so far... Imuran may be an option too... I am no doctor so I cant really tell you. I do study herbal medicine for a hobby. Peppermint tea is very very good for you digestive system! so is fennel tea... Even if it doesnt help you it will not hurt you in anyway. If you do decide to use tea as a helping agent, remamber to not sweeten your healing teas with sugar. Sweeten it with honey. I hope this helps

5

Hello there Heather Janice and Sunshine,

Thanks so much for your info, you know it has already helped!I really appreciate your input.

Unfortunately I got this super ridiculous situation from all the steroids over the years - they call it "MoonFace". I asked the doctor for the medical name for this problem, and she said.........."MoonFace". Go figure. Anyway, I'm down to absolute lowest doses of the prednisone and have only had to take two dosepacks over the past nine months. I used to be on betablockers too. I liked how they worked for my blood pressure, and especially the fact that compared to many meds they have relatively few side effects, but now doc says I can't take them with some of the other stuff I'm on.

I'm on Ropinirole, I think that's generic ReQuip, and I take Hyoscyamine for intestinal spasms. Robaxin and Tizanidine are my two muscle relaxants, then there's Clonidine, Amlodipine and Lisinopril for the high blood pressure. Lovastatin for the cholesterol, Lithium and Citalapram for Bi-polar/Depression, Nexium for the stomach issues, Flostatin for when I absolutely have to breathe, Loratidine for allergies, Folic Acid and Vitamin D. I take all of these daily. Oh, can't forget the Gabapentin for migraines, restless leg and Fibro, and then there's the Lortab for when the pain is more than I can handle. Yikes. Just what I want is another pill. But you know, we do what we can to try to get better.

Oh Sushine, thank you so much for mentioning the peppermint and fennel tea, you reminded me of something I hadn't thought of since my children were born....I used to drink red raspberry tea daily for morning sickness, and it was wonderful. I not only loved the taste unsweetened, but it took all nausea away totally. I think I will see if that is something I can do again, if it won't interact with anything I'm taking. Thanks so much for the tip about the tea. Maybe I can try drinking both the red raspberry and the peppermint. I'd love that.

Take care, friends and thank you again for sharing.

6

I am so glad this helped you. I am sorry to hear about the steroid issues... I hate that stuff. It makes me feel good, but all the side effects.... I am going to pray for you at church tomorrow morning if thats ok with you. I pray for everyone here! when ppl get really bad I put them on the prayer list! We are having our yearly pancake day tomorrow since we are in lent now. I cant stop eating meet, because I am so low in Iron , but I do put down other things for it!

7

Hi kayhlan, I used to take Plaquenil years ago, and i had to have regular eye tests. I went to one at an opticians one day as i needed some glasses or some stronger glasses so i thought, anyway it turned out they had to send me to the hospital afterwards. They didnt explain why, but it turned out i had pigmentation on the backs of my eyes and i was going blind, so i had to stop the Plaquenil as that was causing it. Now i still have really bad eyesight through taking Plaquenil and just age deneration. If i hadnt of had the Plaquenil though i wouldnt be as bad off sight wise. I have to enlarge text when i am reading about five times, and i have to use an extra strong magnifier, just in order to make things out. It has upset me before but now i just adapt to it, so it is better that you dont go on Plaquenil if your Rhuemy thinks this is best. I wonder if there have been alot more cases of the blindness caused by Plaquenil as they were still giving Plaquenil out but with a warning. I have Sjorgrens Syndrome, and many other associated things that go with the Lupus. Did they not test you for the Sjorgrens when they were doing all the other tests for the Lupus, perhaps they forgot to do that one. I really hope it goes okay for you. I am on Steroids and Methotrexate injections which i give myself. But i dont expect it will come to that yet with yourself, as i have had the Lupus for ten years and have been getting worse and worse over time. But you might have Methotrexate tablets, or even Cyclophosphomide infusions which can help, but even with those you have to make sure you drink the two litres of water after to flush the stuff through you otherwise it can cause the bladder to bleed which i ended up getting even though i followed all the rules with it. I had a bad reaction, although it was helping me Lupus wise, so it was abit annoying really seeing as it was helping. It made my bladder bleed so badly they thought i had bladder cancer, they think some of it may of been inflammation as well though, as i do have irritable bladder that comes with the Lupus sometimes. There are lots of side effects with any drugs, and its trial and error finding the right one for you. I was alright on the Methotrexate tablets, which you might have. I do get abit of sickness with the injections though, as i have malabsorption so when i was taking the tablets they werent getting into my system properly anyway, hopefully with time once my body gets used to the injections i wont get the sickness so much. There are other tablets, and there is a new one which i cant remember the name of it, but it depends whether you are suitable for it or not. I really wish you well, and hope the Rhuemy finds something that wont affect your stomach too much, and the oesophogus etc, as thats the last thing you need on top of everything else. Have you had a large dose of steroids via injection at all, as sometimes thats another option. I have one as a top up every so often, about once every couple of months or so, its about 500mls or more, i know its a large slow release one, which takes about two weeks to start getting into my system but once it does it does help. That might be something they consider for you if you havent tried that already. Have a look on the Lupus websites as well, as they should give you a list of all the drugs that can be used for Lupus and its symptoms, that will give you some ideas and then you can discuss things more with your Rheumy, if you know more about whats available to you. Im sure other people on LWL will have other meds they are on to give you an idea of whats available to you, or what the Rhuemy might decide on. Sorry you must be feeling right up in the air at the moment, not knowing what you will be having. I wish you well, and let us know what they decide to give you. And how you get on with the Sjorgrens test, have you not had the Sjorgrens test yet? Sometimes they do it before they diagnose the Lupus. I too get the sores in my mouth, nose and other places, its not pleasant is it. Have they given you anything for that yet? I am going through a tough patch with having a few things at the moment, so i can identify with how you are feeling. I am thinking of you, and hope everything goes well for you, take care, look after yourself, love and hugs Astrid40xoxo

8

Hi Kayhlan, i have just read your message to Heather, Janice and Sunshine, i really feel for you. I have the moon face too, its horrible isnt it? I hate having my photo taken now, as i look a right mess as i say myself, others might disagree but they are probably being polite hehe. I am on alot of the meds you are on, you sound like me with the amount you take. I am on 24 different types of medication, its not good is it? Its remembering it all too, i seem to just go into automatic, i think its probably where they have added and added more things as time has gone on really. How long have you had the Lupus? You are really going through it arent you? And to have the Bi-Polar as well, thats so hard, especially having the lithium. Do you find that the lithium affects your weight as well? I used to be a nurse, so i know abit about these type of drugs, or have they got the levels right for you so its doesnt affect you so badly. I also have a couple of friends who have Bi-Polar, so i see how things affect them when they are either feeling down or really up, or somewhere in the middle, bless them. You are so brave having to cope with everything, and i wish i could wave a magic wand and take it all away from you, all the pain and everything. I wish you well and its lovely to speak to you. Take care, look after yourself, love and hugs Astrid40xoxo

Kayhlan said:

Hello there Heather Janice and Sunshine,

Thanks so much for your info, you know it has already helped!I really appreciate your input.

Unfortunately I got this super ridiculous situation from all the steroids over the years - they call it "MoonFace". I asked the doctor for the medical name for this problem, and she said.........."MoonFace". Go figure. Anyway, I'm down to absolute lowest doses of the prednisone and have only had to take two dosepacks over the past nine months. I used to be on betablockers too. I liked how they worked for my blood pressure, and especially the fact that compared to many meds they have relatively few side effects, but now doc says I can't take them with some of the other stuff I'm on.

I'm on Ropinirole, I think that's generic ReQuip, and I take Hyoscyamine for intestinal spasms. Robaxin and Tizanidine are my two muscle relaxants, then there's Clonidine, Amlodipine and Lisinopril for the high blood pressure. Lovastatin for the cholesterol, Lithium and Citalapram for Bi-polar/Depression, Nexium for the stomach issues, Flostatin for when I absolutely have to breathe, Loratidine for allergies, Folic Acid and Vitamin D. I take all of these daily. Oh, can't forget the Gabapentin for migraines, restless leg and Fibro, and then there's the Lortab for when the pain is more than I can handle. Yikes. Just what I want is another pill. But you know, we do what we can to try to get better.

Oh Sushine, thank you so much for mentioning the peppermint and fennel tea, you reminded me of something I hadn't thought of since my children were born....I used to drink red raspberry tea daily for morning sickness, and it was wonderful. I not only loved the taste unsweetened, but it took all nausea away totally. I think I will see if that is something I can do again, if it won't interact with anything I'm taking. Thanks so much for the tip about the tea. Maybe I can try drinking both the red raspberry and the peppermint. I'd love that.

Take care, friends and thank you again for sharing.

9

My rheumatologist also said that plaquenil could effect vision but it wouldn’t be a problem if I had my eyes checked every year. I can understand your doctors concern if you have vision in just one eye. From what I understand the sores in the nose and mouth are something that happen with Lupus. As soon as I was on plaquenil the sore I had in my nose for years cleared up. They found that I had Crohns disease about 5 years before they found I had Lupus. Given your gastro problems, have they checked you for Crohns? There are sores that are common with Crohns. They are called fistuals and they can be any where on your body, inside and out. So far I have been lucky and have not had them. One lady here in our little town has Crohns and gets them on her arms and a lot on her legs. Crohns put me in the hospital 2 times in 2 years but as soon as they started treating the Lupus, the Crohns calmed way down. Crohns is an autoimmune disease too and the more I am on this site the more I am finding people with more than one autoimmune disease.

10

Hi Patter, i have just come on and noticed your reply which is good. I was on Plaquenil for about a year and had regular eye checks. One week i thought i needed some new glasses, as my eyes were really bad. Anyway i went along, next thing i know is i am being referred to the hospital straight away, although i didnt really know what was wrong. I was going blind in both eyes. I had pigmentation and scarring on both eyes caused by the Plaquenil, so i had to come off it before it got any worse. It still affects me now, i have to enlarge text sizes by a good few sizes, and have a double magnifier. If i had known that even with regular eye tests that there was even a chance i might get this, i wouldnt of gone on the Plaquenil. I now cant read a normal size paperback, i would have to get special books for me to read. My husband bought me an ereader a couple of years ago, which enlarges the text by six sizes, as i was trying to hold a heavy magnifier which were the only ones i could get for the way my eyes are. So everything was getting hard work, so he said why dont i get you an ereader for your birthday, that way you might still be able to read, and it has helped. Yes you are right the sores are due to the Lupus. It must be really hard for you having chrohns disease, they are investigating me for ulcerative colitis, which is funny but not funny as my dog has ulcerative colitis. My dog is on pills though for when he has flares, so if i catch it in time he doesnt usually get any worse. I know the signs now, so i usually do get it in time before the condition escalates on him, bless him he is only little, I also have Caeliacs, i cant stand the taste of half the food though, hehe. I have recently lost a stone in a week. I understand how scary it must be for you having Chrohns, its not easy is it. Alot of the same drugs are used for alot of different auto-immune diseases like the steroids and a few others. As we know the steroids help with the inflammation which alot of auto-immune diseases have lots of. My inflammation rate is very high at the moment, and the pain has been hell at the moment, but we just have to try and get on with it. Coming on LWL has really opened my eyes to how many people have auto-immune diseases of different sorts as well as the Lupus. As i dont meet that many who have these things when i am out and about, it makes you often feel you are alone with it, but coming on here has really made me realise that i am not and neither are others with the same things. Its so good to be able to talk to other people who understand what we are going through on a day to day basis. Thats really good though that as soon as they started treating the Lupus, the crohns got a little better. There is this myth that people dont get more than one auto-immune disease at once, or cant get cancer at the same time as having Lupus, but from what i have seen and witnessed for myself, thats not true. Maybe not that many get more than the one auto-immune disease but it is more commoner than i actually thought it was. So you must be on a fair bit of medication as well. I really hate having to take so many meds, it does get us down from time to time. Once i have taken them for whatever time they are due i am fine, its just when i am coming up to the time i sometimes think, i really wish i didnt have to go and take all those meds, and i am sure alot of other people feel exactly the same way, but sadly its a necessity if we dont want to get any worse eh? I think i will try some of the different teas that have been talked about. Anyway take care, bye for now, love and hugs Astrid40xoxox

11

oh this is typical of doctor that has not read done his homework. I have been on Plaquenil since about 1982. Every 6 months i go see my ophthalmologist. This is not your regular eye person you see for glasses. He is Medical Doctor who specialized in the eyes and does surgeries on the eye.

I would recommend this to you....get ophthalmologist and talk it over with him. They can give you all the facts plus know your history. If they say look as long as you come see us every 6 months, which i have done now for over 30 years! Than opt to try them and see if they help. One good thing about it vs the other drugs people mention they do not upset your intestinal tract.

Peppermint tea might be helpful...i use to drink it all the time till i found out i have GERD...than it can make that worse. If you need to take antacid pills for stomach or esophagus issues odds are you have GERD...but a little should not hurt, i would think. I use to drink it all the time till i got GERD but i still have some sleepy time which has small part of it as peppermint.

I also have fibro and do not take that drug for restless legs.. i had it but just did not help much. My rule is try to stay off as many drugs as possibly. I will try suggested drug such as lyrica...it did not work first time i tried it. I tried it again in year and it has helped ever since. Plaquenil just seems to keep more infections, rashes, etc away. It does not help with pain at all nor did i expect it too by how it was explain to me. yes i still get sun rashes and sores take forever but better than with out..which i did go off it for 6 months once to just see if there was difference.

i also have intestinal issues when i flare...bad cramping where i pass out. I must carry anti diarrhea med with me no matter where i go...even out walking dogs. Only thing that has stopped cramping for me is vicodin. I think for 3 reasons...stops pain, slows intestines down from cramping and has relaxing quality to it.

I tried all the anti spasm pills out there..if new one comes out i usually will give it a go but none seem to really help me...and since i am on the floor for hours if i do not take vicodin...i usually get just so tired and in so much pain that just not worth waiting another half hour see if it going to finally work. I have to be on floor because i pass out if not...and even sometimes down there due to pain from cramping it is that bad...sure you understand.

That is another main reason i try to stay off as many drugs...many upset your intestinal track especially when you start mixing them...and just makes me have flares even more often so not worth it.

Baths can really help with epsom salt....which has some natural qualities you can read on package/ I found it helps greatly with fibro pain...nice hot bath with it and bubbles of course...candle and great book...just really helps when fibro pain is out of control...can keep it at bay for about 2/3 hours after you get out. I am on pain patch as well...which with out...well i been with out it and end up crying i hurt so bad and i handle pain at good level.

One thing my eye doc said also i think was wise is he never allowed me to get contacts once i had to wear glasses part time. He had me watch till our next appt the people who wore contacts and see how many did not wear them due to infections or just irate their eyes. He said with dry eyes you will have even more issues come up from them so just is not worth the risk. What we have to remember as SLE people when we get infections they just tend to hang on for ever with us.

If you like to talk more about intestinal flares...not all SLE people do that...i be more than happy. ..also..hope you get bone scan soon for taking so much pred pills. I do my best not to take them when in my late 20's discovered i had bone density of 50 something old woman.

Also pred pills affected my eyes. I actually think pred are seriously more dangerous drug than plaquenil...but like I said ..go to Eye MD and talk it over with him. My assured me...he even said he give me his 2nd child if he ever let it permanently affect my eyes. hope it all goes smoother soon, sis

12

I am exception...i am allergic to some honeys most of them ....make me sick horribly. Remember Babies can die from honey! I always try to spread this because i have found some people who did not think you could be allergic to honey and yet were nauseated but thought it was the tea.....which it could be if never drank it before.

If you have GERD peppermint anything can make it worse. I still try and have little and can cheat now and than. Plus i found sleepy time tea....has bit in it but does not affect GERD but than I do not drink it nightly.

Astrid you are so right about how many auto immune diseases there are popping up. Think before AIDs...no one knew about lupus crohns sarcoidosis etc...now i saw list of all auto immune diseases and had to be over 50 60 easily and this was like 4 years ago!!

It does make you realize how Docs have such a hard time weeding out what you have and if you have more than one disease.

As to your cute Yorkie...dogs get auto immune diseases just like us...amazing. Sadly that is why they use to do so many studies on them as well. Sure you all have seen white poodles or dogs with white skin...they all get sun burned and even now i am dealing with possible skin cancer on two of my dogs. One i get because she has thin coat and white skin, white fur. But my cattle dog has heavy coat. I think what has increased their risks is that they have lived in the mountains most or all their lives. I now been trying to use spray on sun screen on them year round since snow actually reflects more sun on their bodies. Poor babies...i hope it dose not hurt they sure do not act like it hurts even when i have to deal with sores.

Hope your baby is fine too....

Oh as to getting cancer and having SLE...a good friend her daughter has SLE and bone cancer right now...what a mess for daughter. Her other daughter has crohns but is a nutritionist....she been doing well for years than flared about year ago...they made her not work....she is self employed so that was hard on her...but she got new clients...from doctors she saw while sick....two of them hired her to help with their patients!

So yes people can get cancer and have SLE etc. . Here is my question....i use to say..since my immune system is over active and attacking myself....so if i got AIds which is slow or no immune system ...would the two together make me normal? lol!! i know it would not but amusing to ask people...many ponder it a bit

sunshinespraypaint said:

Well there should be different options that your Doctor knowes about. I myself an on 400mg of it. Thats a very common dose for it. I have had no issues so far... Imuran may be an option too... I am no doctor so I cant really tell you. I do study herbal medicine for a hobby. Peppermint tea is very very good for you digestive system! so is fennel tea... Even if it doesnt help you it will not hurt you in anyway. If you do decide to use tea as a helping agent, remamber to not sweeten your healing teas with sugar. Sweeten it with honey. I hope this helps

13

Hey Siskiyousis - did they ever try Limbitrol as an anti spasm for you? The two times my Crohns put me in the hospital it was for a spastic colon. Sever pain that felt like someone had a knife in my sides constantly. I couldn’t keep food or water down and they had to use morphine to control the pain until they figured it out. As long as I take my Limbitrol two times a day, the pain is there only once in a while and doesn’t bring me to my knees.


siskiyousis said:

oh this is typical of doctor that has not read done his homework. I have been on Plaquenil since about 1982. Every 6 months i go see my ophthalmologist. This is not your regular eye person you see for glasses. He is Medical Doctor who specialized in the eyes and does surgeries on the eye.

I would recommend this to you....get ophthalmologist and talk it over with him. They can give you all the facts plus know your history. If they say look as long as you come see us every 6 months, which i have done now for over 30 years! Than opt to try them and see if they help. One good thing about it vs the other drugs people mention they do not upset your intestinal tract.

Peppermint tea might be helpful...i use to drink it all the time till i found out i have GERD...than it can make that worse. If you need to take antacid pills for stomach or esophagus issues odds are you have GERD...but a little should not hurt, i would think. I use to drink it all the time till i got GERD but i still have some sleepy time which has small part of it as peppermint.

I also have fibro and do not take that drug for restless legs.. i had it but just did not help much. My rule is try to stay off as many drugs as possibly. I will try suggested drug such as lyrica...it did not work first time i tried it. I tried it again in year and it has helped ever since. Plaquenil just seems to keep more infections, rashes, etc away. It does not help with pain at all nor did i expect it too by how it was explain to me. yes i still get sun rashes and sores take forever but better than with out..which i did go off it for 6 months once to just see if there was difference.

i also have intestinal issues when i flare...bad cramping where i pass out. I must carry anti diarrhea med with me no matter where i go...even out walking dogs. Only thing that has stopped cramping for me is vicodin. I think for 3 reasons...stops pain, slows intestines down from cramping and has relaxing quality to it.

I tried all the anti spasm pills out there..if new one comes out i usually will give it a go but none seem to really help me...and since i am on the floor for hours if i do not take vicodin...i usually get just so tired and in so much pain that just not worth waiting another half hour see if it going to finally work. I have to be on floor because i pass out if not...and even sometimes down there due to pain from cramping it is that bad...sure you understand.

That is another main reason i try to stay off as many drugs...many upset your intestinal track especially when you start mixing them...and just makes me have flares even more often so not worth it.

Baths can really help with epsom salt....which has some natural qualities you can read on package/ I found it helps greatly with fibro pain...nice hot bath with it and bubbles of course...candle and great book...just really helps when fibro pain is out of control...can keep it at bay for about 2/3 hours after you get out. I am on pain patch as well...which with out...well i been with out it and end up crying i hurt so bad and i handle pain at good level.

One thing my eye doc said also i think was wise is he never allowed me to get contacts once i had to wear glasses part time. He had me watch till our next appt the people who wore contacts and see how many did not wear them due to infections or just irate their eyes. He said with dry eyes you will have even more issues come up from them so just is not worth the risk. What we have to remember as SLE people when we get infections they just tend to hang on for ever with us.

If you like to talk more about intestinal flares...not all SLE people do that...i be more than happy. ..also..hope you get bone scan soon for taking so much pred pills. I do my best not to take them when in my late 20's discovered i had bone density of 50 something old woman.

Also pred pills affected my eyes. I actually think pred are seriously more dangerous drug than plaquenil...but like I said ..go to Eye MD and talk it over with him. My assured me...he even said he give me his 2nd child if he ever let it permanently affect my eyes. hope it all goes smoother soon, sis

14

Astrid, you are so right about taking the meds! There are some days I wake up and think I’m just not going to go through taking all those pills because I get so tired of it all. But then I take them any way. I guess it’s just nice to think I can be a rebel for a few minutes. My niece has Caeliacs. It’s hard to be on a diet. The Crohns keeps me from eating Italian, Mexican and a lot of the foods we had on a regular basis. Every once in a while I’ll sneak a little and then pay for doing it. Off to the doctor again today. Hopefully the last visit for the knee replacements I had. Love, hugs and prayers!


astrid40 said:

Hi Patter, i have just come on and noticed your reply which is good. I was on Plaquenil for about a year and had regular eye checks. One week i thought i needed some new glasses, as my eyes were really bad. Anyway i went along, next thing i know is i am being referred to the hospital straight away, although i didnt really know what was wrong. I was going blind in both eyes. I had pigmentation and scarring on both eyes caused by the Plaquenil, so i had to come off it before it got any worse. It still affects me now, i have to enlarge text sizes by a good few sizes, and have a double magnifier. If i had known that even with regular eye tests that there was even a chance i might get this, i wouldnt of gone on the Plaquenil. I now cant read a normal size paperback, i would have to get special books for me to read. My husband bought me an ereader a couple of years ago, which enlarges the text by six sizes, as i was trying to hold a heavy magnifier which were the only ones i could get for the way my eyes are. So everything was getting hard work, so he said why dont i get you an ereader for your birthday, that way you might still be able to read, and it has helped. Yes you are right the sores are due to the Lupus. It must be really hard for you having chrohns disease, they are investigating me for ulcerative colitis, which is funny but not funny as my dog has ulcerative colitis. My dog is on pills though for when he has flares, so if i catch it in time he doesnt usually get any worse. I know the signs now, so i usually do get it in time before the condition escalates on him, bless him he is only little, I also have Caeliacs, i cant stand the taste of half the food though, hehe. I have recently lost a stone in a week. I understand how scary it must be for you having Chrohns, its not easy is it. Alot of the same drugs are used for alot of different auto-immune diseases like the steroids and a few others. As we know the steroids help with the inflammation which alot of auto-immune diseases have lots of. My inflammation rate is very high at the moment, and the pain has been hell at the moment, but we just have to try and get on with it. Coming on LWL has really opened my eyes to how many people have auto-immune diseases of different sorts as well as the Lupus. As i dont meet that many who have these things when i am out and about, it makes you often feel you are alone with it, but coming on here has really made me realise that i am not and neither are others with the same things. Its so good to be able to talk to other people who understand what we are going through on a day to day basis. Thats really good though that as soon as they started treating the Lupus, the crohns got a little better. There is this myth that people dont get more than one auto-immune disease at once, or cant get cancer at the same time as having Lupus, but from what i have seen and witnessed for myself, thats not true. Maybe not that many get more than the one auto-immune disease but it is more commoner than i actually thought it was. So you must be on a fair bit of medication as well. I really hate having to take so many meds, it does get us down from time to time. Once i have taken them for whatever time they are due i am fine, its just when i am coming up to the time i sometimes think, i really wish i didnt have to go and take all those meds, and i am sure alot of other people feel exactly the same way, but sadly its a necessity if we dont want to get any worse eh? I think i will try some of the different teas that have been talked about. Anyway take care, bye for now, love and hugs Astrid40xoxox

15

Sounds like you might need an immune suppressant like Methotexate or Imuran. Of course, all of the meds have side effects. The Dr has to weigh your symptoms v.s side effects. It also depends how severe your symptoms are. I've had Lupus for 22 yrs affecting my kidneys, joints, bone marrow dry eyes & mouth. I've been on 1,000 Mg of Cellcept 4 mg Prednisone,, Plaquenil. Didn't know it caused blindness but see an Ophthalmologist yearly. I'd ask your Rheumatologist what your options are

16

Hi Patter, Yes it is good to think for a minute we are going to rebel with it all. I am terrible now, as if i dont want to do something i wont, not healthwise though. I used to do everything anyone asked, or go anywhere anyone asked me to go, but now if i dont feel like it or dont want to, i wont put myself through it. After all we only have one life eh, and its tough enough without making it any tougher. I dont mean i wont help anyone though. I help those who really need it, if i am able to. I dont feel obliged to attend any functions that i dont really want to, if i know i am not going to enjoy it, there has to be some perks for having this disease eh, hehe. I think its more if i go to something like that with people who i dont know that well, i get sick of the questions especially if i have to go in the wheelchair, and the oh, but you dont look sick answers, and other stupid insensitive comments. So why put ourselves through it eh? Its not pleasant having Caeliacs, you have to change your whole way of eating, i am like you though i have the odd moment when i think i would really like something that i should have to eat, and like you said we pay for it afterwards. I have a cousin with crohns and she really goes through it, bless her. She was really really ill for a while and lost tons of weight and kept having chronic diarrhoea. They thought i might have that at first as i had all the symptoms, but it was the ulcerative colitis, like my grandmother. I think these things do run in families. I have abit of a weakness for nice cakes, not cream cakes but choc chip muffins or sponges, which isnt any good for me. I am not to bad with chocolate now, i dont eat it anymore. I think it might be as once when i wasnt too unwell, my husband bought me this really luxury box of handmade chocolates, which were so expensive and exquisite, that nothing really tasted as good as far as chocolate goes, so he did me a favour in a way, hehe. It is hard to diet you are right. At the moment i am at an odd stage as i am not eating hardly anything, in fact i am really struggling to eat even a third of any meal, and have lost about 12kg now in two weeks, which isnt healthy really. I expect when i have another huge steroid injection though that will all change, as my appetite is sure to come back, thats when i will have to watch it as i am bound to gain all that i have lost. I dont want to gain it though, as i would love to keep losing it but its a battle to get anywhere usually with weight unless you eat next to nothing. Anyway i will say bye for now, take care, love and hugs Astrid40xoxo

Patter said:

Astrid, you are so right about taking the meds! There are some days I wake up and think I'm just not going to go through taking all those pills because I get so tired of it all. But then I take them any way. I guess it's just nice to think I can be a rebel for a few minutes. My niece has Caeliacs. It's hard to be on a diet. The Crohns keeps me from eating Italian, Mexican and a lot of the foods we had on a regular basis. Every once in a while I'll sneak a little and then pay for doing it. Off to the doctor again today. Hopefully the last visit for the knee replacements I had. Love, hugs and prayers!



astrid40 said:

Hi Patter, i have just come on and noticed your reply which is good. I was on Plaquenil for about a year and had regular eye checks. One week i thought i needed some new glasses, as my eyes were really bad. Anyway i went along, next thing i know is i am being referred to the hospital straight away, although i didnt really know what was wrong. I was going blind in both eyes. I had pigmentation and scarring on both eyes caused by the Plaquenil, so i had to come off it before it got any worse. It still affects me now, i have to enlarge text sizes by a good few sizes, and have a double magnifier. If i had known that even with regular eye tests that there was even a chance i might get this, i wouldnt of gone on the Plaquenil. I now cant read a normal size paperback, i would have to get special books for me to read. My husband bought me an ereader a couple of years ago, which enlarges the text by six sizes, as i was trying to hold a heavy magnifier which were the only ones i could get for the way my eyes are. So everything was getting hard work, so he said why dont i get you an ereader for your birthday, that way you might still be able to read, and it has helped. Yes you are right the sores are due to the Lupus. It must be really hard for you having chrohns disease, they are investigating me for ulcerative colitis, which is funny but not funny as my dog has ulcerative colitis. My dog is on pills though for when he has flares, so if i catch it in time he doesnt usually get any worse. I know the signs now, so i usually do get it in time before the condition escalates on him, bless him he is only little, I also have Caeliacs, i cant stand the taste of half the food though, hehe. I have recently lost a stone in a week. I understand how scary it must be for you having Chrohns, its not easy is it. Alot of the same drugs are used for alot of different auto-immune diseases like the steroids and a few others. As we know the steroids help with the inflammation which alot of auto-immune diseases have lots of. My inflammation rate is very high at the moment, and the pain has been hell at the moment, but we just have to try and get on with it. Coming on LWL has really opened my eyes to how many people have auto-immune diseases of different sorts as well as the Lupus. As i dont meet that many who have these things when i am out and about, it makes you often feel you are alone with it, but coming on here has really made me realise that i am not and neither are others with the same things. Its so good to be able to talk to other people who understand what we are going through on a day to day basis. Thats really good though that as soon as they started treating the Lupus, the crohns got a little better. There is this myth that people dont get more than one auto-immune disease at once, or cant get cancer at the same time as having Lupus, but from what i have seen and witnessed for myself, thats not true. Maybe not that many get more than the one auto-immune disease but it is more commoner than i actually thought it was. So you must be on a fair bit of medication as well. I really hate having to take so many meds, it does get us down from time to time. Once i have taken them for whatever time they are due i am fine, its just when i am coming up to the time i sometimes think, i really wish i didnt have to go and take all those meds, and i am sure alot of other people feel exactly the same way, but sadly its a necessity if we dont want to get any worse eh? I think i will try some of the different teas that have been talked about. Anyway take care, bye for now, love and hugs Astrid40xoxox