Medications?

Hello to everyone here, i hope that you are all having a better if not a great day today.

My name is Jude i am Jons wife, i come here to try and support Jon in every way i can and although at the moment he struggles to get off the sofa. I need this group to be able to help him. Which is why we are all here x

We live in New Zealand and i know that most of you live in other places around the world. Which is why i thought it would be interesting to find out more about medications and dosages that doctors from all sorts of countries or provinces use.

Jon has Lupus, although as we know they hate to formally diagnose that, and often his blood test results show negative...but other times they show a positive reading. He was ill for a very long time with a back problem and was on lots of different medications for this over a nearly 20 year period, this kind of makes me wonder if his Lupus was a result of medication. Now he suffers from Fibromyalgia as well. This he finds extremely debilitating, the fatigue and muscle aches mean he just sleeps and gets very depressed that he cannot do more to help me with our family of 7 children.

I would really like to start something to find out what is working in the way of help for you all and what isnt or hasnt....

What we should be keeping an eye on and advocating with his doctor. I have asked Jon to give me a list of all his meds and dosages so i can post them on here and would love to have you all do the same if you want. I am sure we can all learn so much by comparison and from learning from one another just what you all and your carers must live with as our new life.

Blessings to you all and please let me know if i am doing this right lol and where i need to be on this site to follow this along x

Hi Jude,

I want to say 'Hey Jude' but you probably get that a lot.

Anyway, I'm sorry about what you and your family are going through. I struggle with 2 children so I can't imagine 7.

My Rheum is reluctant to firmly diagnose me, but I started on Plaquenil recently. It is an anti-malarial. I also have fibromyalgia and have been struggling to get out of bed for the last 8 months. I sympathize with your husband in that way-it's a very frustrating feeling.

To give you a lead into why i'm on the following meds-it started years ago with insomnia, then depression, and terrible headaches. I only recently discovered it being Lupus after experiencing debilitating pelvic pain, then fatigue like I've never had before. I was sure I had cancer. Well, after many docs and scans, I was able to get cleared for a hysterectomy. After that I still didn't feel better and pressed on. Finally 3 antibodies showed up positive, one being the anti-Smith.

So, I currently take Plaquenil, Wellbutrin, Pristiq, Clonazepam, Percocet (hope to be off soon), and Vitamin D and Iron supplements because my blood levels were very low.

I just started the Plaquenil and am finally feeling somewhat hopeful. I'm also doing aquatherapy for Fibro, and meditation. I think this combo could help, and I am eating a healthy diet as well.

Hope that helps and the best to you and your husband,

Nicole

Hi Jude: I too have been recently diagnosed with Lupus. My heart aches for what you and your family are going through. Its a tough diagnosis and it messes with your mind. I just saw the rheumatologist for the first time yesterday and I was started on Plaquenil, infact I just took my first dose this morning. As a nurse I know medications are to help and they do, but I sure hate taking them. I just pray it brings my platelet count and WBC count up or I will be having more invasive therapy. Has your husband spoken to his doctor about antidepressants? I have found that exercise helps me at least to keep moving, walking outside in fresh air is my personal favorite. Praying he finds relief.

Wendy

Hi, you have my sympathy. Nobody really understands how people feel when the have a never un-ending list of symptoms. Lupus covers so many different things. I too have Lupus and Fibromyalgia (amongst other things). My medications are: MYCOPHENOLATE; PLAQUENIL; WARFRIN; CO-CODAMOL; PREDNISOLONE; ALENDRONIC ACID; PANTOPRAZOLE; RAMIPRIL; NIFEDIPINE; CITALOPRAM. Think that is it. I live in the Uk, so some of these may not sound familiar. Just keep strong, and never give in - that is all we can do. Thoughts and prayers are with you xxxx

Hello Everyone,

My name is Wanda. I was diagnosed with Lupus in 1998 shortly after my hysterectomy. I honestly believe the hormone replacement therapy drugs brought on my Lupus along with the shock of major surgery to my body. Before then I was completely healthy. Since then I have had nothing but medical problems. Don't want to drag this out and make it boring, but I wanted to warn those of you who may be on Plaquinil. I developed a SEVERE case of PSORIASIS on my scalp, ears, face, back, chest, elsbows and legs. There is no history of psoriasis in my family and I had never had any skin problems before this. My derm told me plaquinil can bring it on, but my rhuemy said it was rare. So I took all these expensive oral and topical steroids to try and control this new and horrible ailment. Nothing worked. It just got worse and worse and I was starting to lose my hair too. I finally got my rhumy to agree to take me off of it and guess what? In two weeks the psoriasis started to heal itself. It is almost completely gone and my hair is starting to look great again.

So be your own best advocate. Do your homework. Do research. Don't put 100% of your trust in doctors. I was on so many drugs and gained weight, but still suffered with pain and depression. Now all I take is methaltrexate, vitamin D, folic acid and calcium. Still have bone, muscle and joint pain, but I have learned to live with it.

God bless us all.

Hello Jude,

Sorry to hear about Jon and give him our best reagrds as well all know how he feels....his blood tests coming in positive one minute and negative the next is the lupus fluctuating the bloods as it can give off false readings...that's why alot of specialist's keep taking bloods till they treat their patients...the depression which Jon is going through Lupus loves it and thrieves off it and it makes patients feel the symptoms alot stronger.

I myself was diagnosed 5yrs ago with psoriasis, then onto Raynauds then DLE in the end, then i was refered to the Rheumo who did extensive bloods which came back positive and high and after 26yrs history of ailents of seizures/strokes/spondylosis/DVT and more...i was told i was born with it can got it from my parent/s but i started feeling affects are 5yrs old of being freezing cold besides a bad chest and i have A1 Diseases over lapping Autoimmune Diseases and since being diagnosed my youngest sister as been tested and she as it in her blood besides skin problems.

I'm on high quantities of drug for other issues but concerning Lupus i was on plaquenil a great drug which only lasted a year & half and for a month i've been moved onto Dapsone a stronger chemo drug.

God Bless You both Terri xxx

Hi to all, thank you so much for your feedback you are all totally inspiring and awesome, i am so happy to have found this group and know that our family and Jon are not alone, all of the meds you have mentioned Jon is on or has been on, i think my next big push is to get him to keep a daily record of how he is feeling so as flares are about to creep up he is atleast aware of how the next few days will pan out and knowledge is a great weapon for being able to be strong until the flare is over...trouble is sometimes the flares last longer than the remissions lol....

Also i need to get him to find the energy to walk in the garden i know as you have all said that excercise is a biggie especially for your mental wellbeing.

God Bless you all and together we might not beat Lupus but we can give it a bloody good fight xo

Hi Jude--

Very nice to read your post & I am very sorry to hear of the hard time your husband is having. I was diag.6 yrs ago & honestly--have tried sooooooooo many meds, but it seems the side effects out weigh the Lupus-awful feeling.

It took the Doctors almost 2 yrs to figure out what I have & it is a frustrating experiece. U r correct to say that the tests some times show positive & then at other times come bck neg. Can make u feel crazy..........

I wish I had WONDERFUL news to tell u, but one thing I can say---------if I did not live in America-----I would try Stem cell therapy. I read extreme results, but it is not legal here.

Keep the chin up----though I know it is not only a day to day, but minute to minute life.

Peg

Hi Jude, tell Jon hope that he feels better and just rest as much as possible !!!! Yes the rest part is hard , but Lving with LUPUS require a lot f rest !!! My prayers go ut to him .... Beverly L.

Hi my name Lia,i was diagonosed with lupus as of april this year I too was in alot of pain i donot have any children but have been taking care of my mom for over 20 years and have never given it a second thought. I too had musle joints aches and pains, , swelling of the feet hands, low blood ,I have epilepsy as well as pulmonary hypertension , so I maybe on some meds others are not since I have a couple different illnesses. I was going to work everyday despite my illnesses, I too take plaquenil for lupus but I take vitamin d as well for my bones I have no feeling in a couple of my fingers and the bottom of my feet feels numb, With my heart I can feel just as good when fluids are on my heart and it is time for me to releive myself it is funny how the body works.

Predisone is for pain and morphine for pain I want so much to go back to work, I have been on on LOA for a few months ,being around others just being out and about I miss so very much my independence , I still have so much to be blessed for, my five senses I still have alot of people living in this world cxannot see the beutifull things God has put out here, touch, feel, smell.It is easier said than done to stay strong , Faith in God has to be there with out a doubt and I am learning that in life whether in the begining, middle or towards the end we are going to go through obstacles.You and your love ones are never alone he is always listening, please stay strong you are doing his work ,LIA