News:

Just a reminder: if you haven't signed in for six months or more, please do so if you wish to remain active...no need to post, just sign in so we know you're still interested.

Main Menu

Advice needed please

Started by swottish, November 03, 2017, 10:58:45 AM

Previous topic - Next topic

swottish

Dear all,
I'm hoping those of you with experience of SjS and treatment for it can give me some advice.
My history briefly: Hashimoto's since 1972.
In 2015 I was diagnosed with SjS, but I had been very unwell seven years before that. I was prescribed Hydroxychloroquine 400 mg and have been on them since then.
In May 2016 I was also prescribed Prednisolone 60 mg for Polymyalgia Rheumatica, later tapered down and now on 5 mg.
In October last year I suddenly got excruciating pain in my left shoulder/arm which was diagnosed as Brachial Neuritis. The left arm is still weak and there is severe muscle waste in my left hand too. The hand is not very useful because of this.  I'm waiting for a Nerve Conduction Study.

After a few months on Hydroxychloroquine I felt a wee bit better, but much better when I was started on Prednisolone until the side effects begun to come. However, since they where tapered down I've had a few setbacks. I've also had a few bad infections and the last few months I have not been feeling that good at all with many of my symptoms coming back. The fatigue and the pain in my bones, joints and muscles is much worse and I have difficulty to walk. My mood is effected too. I don't know if this is because of SjS or it's a side effect of either Hydroxychloroquine or Prednisolone.
I saw my Rheumatologist a few weeks ago and she suggested that I should try Methotrexate instead to see if I will stabilise and feel better. I'm very sensitive to new medications and get severe side effects, so I hesitate to try it and don't know what would be best to do.
I'm sure many if you are, or have been, in a similar situation as me, we all want nothing but to get better, but sometimes you feel overwhelmed by all the setbacks and don't know where to go next. There is where I am now, so please, if you want to share your experiences and give advice it would be very much appreciated. Thanks.
Swottish


Joe S.

I suggest that you web search all drugs you are on for interactions, side effects and counter indications. Then when strange symptoms crop up you will know if it is something new or something from you meds. I have problems so I tend to treat more with supplements.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

swottish

Thanks Joe for your suggestion to look into interaction  between drugs.  I will do a research and see what comes up. It would be interesting to know if anybody on here have been on Methotrexate and how it was tolerated. Also if anybody has had problems with interactions between different drugs that is prescribed for us with Connective Tissue Disorder. Every little information is helpful. Thanks.
Best wishes to you all.
Swottish

Joe S.

My system seems to be unusual. Mtx shut down my bile system and gave me white poo. For arthritis symptoms I take boswellia and curcumin and Tart cherry extract.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism