plaquenil (hydroxychloroquine)

Yes Pam Quinoric was the first one I tried but it upset my

stomach quite badly, Doc said it was probably because of

different fillers. I was fine with Plaquenil but I believe it is

because the Patent has run out. I contacted them and they

me that the same product was being made at their sister in a

generic form so really if it is the same it probably something

else that's causing the symtoms.

I'm not a member of BSSA but I will join. Thanks for your

help Pam.

Your most welcome. I would suggest the BSSA as they can give you the most up to date knowledge of what drugs are available. 

Yes that is a very good idea as you so rightly say by the time you see your rheumy the rashes, swelling raynaulds may have gone until the next flare! 

Thanks Miral, good idea. Do you're legs and feet feel quite

hot? Sometimes my feet feel as though they are burning. It

doesn't feel as bad when I'm walking for some reaon.

BTW I checked with Zentiva and they said that the formula

is exactly the same as Plaquenil, so that rules that out.

They may either be hot or cold, swollen or wasted either way please contact your Rheumy if you have tingling 

Cloch, I don't get the hot sensation. The purpura and/or petichiae, if severe enough, will slowly knit together into one crimson mass and climb up my thighs to my torso. (Two times, I even had red spots spreading down my arms and this was truly upsetting to me because now, after 9 years of vasculitis flares, my ankles and parts of my calves/feet are permanently stained dark. I have very pale skin, so it's noticeable unless I cover up.)

When the vasculitis is that bad, my joints hurt worse than usual and it's as if my skin were horribly sunburned. All the soft tissue in my legs--fleshy party of the calves, behind the knees, etc.--is so tender that I can't let anything touch my legs and I can't even elevate them because it's so painful to place weight on them. I also nearly also run a low-grade fever and feel very fatigued. I try to take as little painkiller as possible (I have a prescription for hydrocodone) on "normal" days so it will actually make some difference on these bad days.

But everyone has such myriad symptoms with this disease. My rheumy told me that only 2 out of his 100 or so Sjogren's patients have vasculitis. The vasculitis flares were actually my first symptom. I only started having dry eyes and dry mouth about 4-5 years ago. I also have lung involvement and was in the ICU twice with pneumonia, followed both times by long-lasting, extremely painful bouts of pleurisy. The last time was 6 years ago, but I still feel twinges of pleuritic pain all the time. 

I hope you can find out something definitive from your doctor! My mother also suffers from burning feet due to neuralgia from various causes. I know there is a medication she takes specifically for that, but I don't know offhand what it is. 

Thanks Pam and Miral, I have an app. wìth G.P this

afternoon so I'll keep you posted.

Good luck🍀

Just back from G.P and he's ordered extensive blood tests

which I will have tomorrow. I mentioned neuropathy but he

thinks that it is more likely to do with my Lupus (I have

cutaneous lupus). I'm getting a bit concerned as we have

just booked to go to Budapest on 30th of month, we had to

cancel the last one we booked because I was poorly, ho hum.

Can anyone suggest anything to take the edge of the discomfort

Sorry no I really don't know of anything other than a steroid cream. 

Thanks Pam. I've tried painkillers but they don't help.

I hope you find our your test results soon, and that you can figure something out so that you don't have to cancel your trip. That is a very frustrating side effect of an AI and its umpredictability.

This may sound very simplistic, but what about placing your feet on a cooling pillow when they burn--the type with an inset of cool gel? Other than that or possibly using ice packs, I would just say just rest as much as you can right now. If you are having a flare of some sort, rest is an essential ingredient in your care! 

Thanks Miral, I have been using the old standby.......packs

of frozen peas. I also find that massage helps a bit. The

frustrating thing is that we have been putting the trip off

'till I was feeling better and as I had been pretty good for

4 months we decided to go ahead and book, and that was

only 2 wks. ago! Can't believe it.

Well you know how AI diseases flare and then go. Once you get on holiday REST relax and rest. If you don't your AI disease will get worse! Rest and relax! I know from my own lifelong experience of having PCOS/Psoriasis and JHS long before I had a positive ANA, that if you don't, you WILL get worse! 

Yes Pam I agree about rest is best, problem is it as a city

break we're going on which is basically sight seeing which at

this stage would be impossible.

Oh dear! that's the problem, we take these breaks because they look attractive, then to our horror we realise that we are having a flare! I know I have been there done that and got worse from worring and stressing as how I can cope! Good luck! 🍀