I had to see a opthamologist before i started the plaquenil but an eye test first as my eyes are bad and concerning vision they said i was ok for the plaquenil and would send for me in 6mths time, i've never heard from that department since and carried on taking the drug.
Well i'm pleased your eyes are being treated they tested my eyes in the rheumo department to see how dry they was and i came 6/10 and the nurse said we worry when it reads 3/10 but my rheumo knows i have it bad besides the lupus and would only treat me with either prednisone or plaquenil and he wanted me on 400 daily of that and when he read the amount of other drugs i was taking soon dropped it to 200mg daily and prescribed 4000mg of paracetamol daily and now some doctor's have been worried about the consequences of damage to my liver which holds a tumour and bleeding of the stomache so i'm in a no win situation at the moment. I've had to come off the plaquenil 2 days ago and tonighti start Dapsone a stronger med and hopefully it will help my skin more but the side affects are tronger than the plaquenil, i've got my husband abit worried about my system coping but that life.
I am really pleased though your being treated and the things your having for your eyes do help but if they get to bad they can turn to plugging your eyes which really helps alot.
You takecare my friend and all my love Terri xxx
Della said:
Hi Terri,
I see my opthamologist every 6 months, but am going to have to give him a call earlier. He normally prescribes steriod drops when the white blood cells show up in my eyes. That's what makes my vision blurry. I use restasis twice a day for the Sjogren's and regular wetting drops in between during the day. It seems if it's not one thing it's another, but it could be a lot worse and I'm grateful that it's not. I thank God everyday.
I hope you are doing ok and enjoying your week.
Della
Tez_20 said:
Hello Della,
Sorry it's took me a few days to reply, not been to good on coming on the site and missed it.
I'm sorry to hear you've got full blown Lupus and sjogren's like myself and if your able to establish symptoms between the two, you'll find the Lupus fighting the sjogrens at times and symptoms may feel worse.
Regarding your eyes you definitely need to see a opthamologist and they'll say how bad your eyes are but sjogrens with diabetes is all you need, as the sjogrens can really hurt the eyes and make them dry and sore plus it does affect the muscles in your body and it starts with the face...i get quite alot of symptoms off it and you've only to get intouch.
Your cholesterol definitely needs testing mine used to be high also...Della the whole lot can stress we and that stress you get Lupus alone loves it and flares can occur more through this, i know it's easy to say and i have such a game at times controlling stress but if you can it will help such alot.
You takecare Della xxx
Della said:
Hi Terri,
I had another Dr's. appt Friday and was confirmed as having full blown lupus and Sjogren's. I go back in 3 months to my GP and Rheumy both. I need to call my opthamologist on Monday, as my vision is blurry in my left eye which means my Sjogren's is acting up on top of the lupus pain. My cholesterol was 114 , and my Dr told me he wants it under 100 because I have diabetes. So now I have to add that to my diet to watch. He said if I wasn't diabetic that 130 and under is considered normal. I've been a little stressed and that has probably brought the flare on, but I know with time it will get better.
I'm getting better about my journal and I think that will help a lot. It will be easier to track if something is setting me off.
Hope you are having a wonderful weekend and are feeling ok.
Della
Hello Della,
How are you feeling today and i hope it's abit less pain free for you.
Beverly as given sound advice...because everyday issues do have to be took steady or else you'll ware yourself out and it's not worth it and alot of people do diary's and also note down daily if they can remember what the illness is doing to them as it all helps when you see the specialist.
Your husband though supporting you like mine goes such along way...i do know that if i had'nt got that i'd go completley mad and especially having no children to turn to either.
I've had plugs in my eyes for a couple of years already. I've had problems with my eyes for about 30 years, but none of my Dr's could figure out what was wrong. Funny, huh?
I'm so glad that they tested you to set a baseline, but it's strange they haven't had you come back in to check it.
I hope your new med helps you. I know it can be so frustrating and scary. Thank goodness we have husbands that care so much!
Hugs, Della
Tez_20 said:
Hello Della,
I had to see a opthamologist before i started the plaquenil but an eye test first as my eyes are bad and concerning vision they said i was ok for the plaquenil and would send for me in 6mths time, i've never heard from that department since and carried on taking the drug.
Well i'm pleased your eyes are being treated they tested my eyes in the rheumo department to see how dry they was and i came 6/10 and the nurse said we worry when it reads 3/10 but my rheumo knows i have it bad besides the lupus and would only treat me with either prednisone or plaquenil and he wanted me on 400 daily of that and when he read the amount of other drugs i was taking soon dropped it to 200mg daily and prescribed 4000mg of paracetamol daily and now some doctor's have been worried about the consequences of damage to my liver which holds a tumour and bleeding of the stomache so i'm in a no win situation at the moment. I've had to come off the plaquenil 2 days ago and tonighti start Dapsone a stronger med and hopefully it will help my skin more but the side affects are tronger than the plaquenil, i've got my husband abit worried about my system coping but that life.
I am really pleased though your being treated and the things your having for your eyes do help but if they get to bad they can turn to plugging your eyes which really helps alot.
So really you've been having issues for 30yrs and they just finally found the reason besides the diabetes ontop and i know how bad that is because my mom suffered with that bad and was on insulin and had both her eyes done.
Della Newcross hospital i attend is that busy, i'm not surprised i've not heard off them and i have to chase other departments alot of the time and they've done a system now where you don't get an appointment until 2wks before your due to see the consultant i went mad on the phone because it's not fare on people if that appointment falls on the same day as another but this is what the doctor's want now to help them.
Della i was going to start the Dapsone lastnight and i left it, i've been off the plaquenil 3 days and i thought give my body a full rest until next monday so i can adjust to starting the new drug as the plaquenil is still inside me.
I do dread starting new drugs been like it for years as i've had some terrible experiences with some and being pulled off them straight away is'nt pleasent besides.
I hope your feeling ok and all my love Terri xxx
Della said:
Hi Terri,
I've had plugs in my eyes for a couple of years already. I've had problems with my eyes for about 30 years, but none of my Dr's could figure out what was wrong. Funny, huh?
I'm so glad that they tested you to set a baseline, but it's strange they haven't had you come back in to check it.
I hope your new med helps you. I know it can be so frustrating and scary. Thank goodness we have husbands that care so much!
Hugs, Della
Tez_20 said:
Hello Della,
I had to see a opthamologist before i started the plaquenil but an eye test first as my eyes are bad and concerning vision they said i was ok for the plaquenil and would send for me in 6mths time, i've never heard from that department since and carried on taking the drug.
Well i'm pleased your eyes are being treated they tested my eyes in the rheumo department to see how dry they was and i came 6/10 and the nurse said we worry when it reads 3/10 but my rheumo knows i have it bad besides the lupus and would only treat me with either prednisone or plaquenil and he wanted me on 400 daily of that and when he read the amount of other drugs i was taking soon dropped it to 200mg daily and prescribed 4000mg of paracetamol daily and now some doctor's have been worried about the consequences of damage to my liver which holds a tumour and bleeding of the stomache so i'm in a no win situation at the moment. I've had to come off the plaquenil 2 days ago and tonighti start Dapsone a stronger med and hopefully it will help my skin more but the side affects are tronger than the plaquenil, i've got my husband abit worried about my system coping but that life.
I am really pleased though your being treated and the things your having for your eyes do help but if they get to bad they can turn to plugging your eyes which really helps alot.
I've only been a diabetic for a year. I take metformin for it, but my bs is rarely over 110 which is wonderful. I was put back on the steriod eye drops today for a week. If my vision isn't back to normal then I have to go back and see the Opthamologist again. I was just on them the beginning of last month for this darn Sjogren's, so I hope this takes care of it for awhile.
I really hope your diabetes stops stable for you, i really do because it's a nightmare at times for some people and i hope the steriod eye drops help..steriods are good in one way for helping situations quickly but they can give off some right side affects otherwise, i know i'll never touch them again.
The sjogrens is a pure nightmare and plays me up terrible with other symptoms, like paralization of the face on the right side mainly, it trys your gullet out and stops saliva flowing and then swallowing food becomes a terrible issue and lodges then gives off pain besides it's given me musckle wastage...i was diagnosed with that in my 20s when they found out i'd been born with cervical spondylosis and they had'nt a clue where it came from till i first saw my rheumo who told me it had come from that plus it's caused my ligaments in the back of my legs not to stretch hardly...sometimes i feel like i'm living in a nightmare.
Today i've woken with my legs in pure pain and tight..my left eye and head in pain from the stroke and my left kidney is still playing up but you know the saying "Life goes on".
Thanks for asking Della and i hope your day goes ok also.
Love Terri xxx
Della said:
Hi Terri,
I've only been a diabetic for a year. I take metformin for it, but my bs is rarely over 110 which is wonderful. I was put back on the steriod eye drops today for a week. If my vision isn't back to normal then I have to go back and see the Opthamologist again. I was just on them the beginning of last month for this darn Sjogren's, so I hope this takes care of it for awhile.
You should have your rash biopsied. I get a rash from the sun like most with lupus, however, I have a rare form. There are three types do skin lupus. Discoid, which is the most common. Tumid, which is the type I have and another that is very rare.
Your symptons sound like mine.
If they won't do a biopsy they can definitely find out by bloods being taken, as they found i had bad psoriasis mimicing ringworm and it's led furthur on to DLE.
((Hugs Terri xxx))
Dewing3569 said:
Della
You should have your rash biopsied. I get a rash from the sun like most with lupus, however, I have a rare form. There are three types do skin lupus. Discoid, which is the most common. Tumid, which is the type I have and another that is very rare. Your symptons sound like mine.
You are blessed to have such a supportive husband, mine bitches whenever I get sick & acts like a toddler having a temper tantrum. My symptoms are similar to yours. However, I have organ threatening Lupus. It's important to put the disease in remission quick so it doesn't get worse. Find a good Rhemuatologist & work together to find a treatment plan that works for you. Someone who is "open minded" that you can discuss alternatives to taking steroids or biologics.