Nasty flare up. Advice sought?

[MAT51]

I don't think it would be fair to blame the Cellcept which I started on Monday for this. But it's my first flare up since the SFN took a back seat late last year. It feels like flu with my limbs aching, left wrist throbbing, and terrible tinnitus like a very high pitched alarm bell ringing constantly, sour taste worse than ever, weak, stiff arms and legs etc. I'm terribly dizzy rather than just suffering from the usual disequillbrium rubbish. Eyes are horribly dry and swallowing is hard with feeling of food stuck in my oesophagus worsening. My gums, too teeth and nose feel as if someone has stuck them in a vice and gums and lips are on fire.

Should I try and contact my rheumatologist to get a one month course of steroids or perhaps an injection in the bum - just to help over the festive season while Cellcept/MMF kicks in? But would it help or just be a waste of time? I haven't had an IM steroid shot for nearly six years since my first inflammatory arthritis flare. 

Advice would be much appreciated because I haven't had a flare up quite like this before with everything all flaring at once. I can't tolerate anti-inflammatories or other pain killers well. I just don't know what to do?

[Pete0211]

I'd certainly get in touch with the rheumy and get their advice, if not the steroids. Hope it settles down and you're feeling better soon

[SjoGirl]

Have you connected with your PCP about this? I just had a similar bout for the past four to five days and wonder if it might be a virus that is going around.

[MAT51]

Well I'm living on a Scottish island so my virus probably wouldn't be yours . However I've thought of this as there is a flu-like thing going about. But this is just a very exaggerated version of symptoms I always have so I feel it's a flare up. I have been very busy and standing up holding things a lot this might have triggered the joint and tendon aches and caused extra fatigue. Or it could be the Cellcept is a big shock to my body and it's flaring up in response? I will try and speak to the rheumy tomorrow if I wake up (or fail to sleep) feeling this way. I'm far away from my new GP just now although my old ones are just down the road but they can't administer steroids for me so not much use bothering them!

[Sharon]

I have experienced worsening of symptoms on new meds (Plaquenil...)
as well as when my body is fighting an infection (revs up the AI system).
You might want to look into both those possibilities.

[MAT51]

Thanks Sharon. I think it's because of a combination of stress from work and the Cellcept - which is giving me diarrhoea and making me even severely lightheaded/ dizzy. I'm not sure how long I'll be able to cope with these side effects if they continue but I'm determined to stay on it if I can. I really just needed a moan!

[Jasper]

MAT51 .....

It could be a flare. But it could also be the Cellcept.

I finished a 20 day taper of Prednisone (for a flare) and started Cellcept the same day that I finished the Pred. taper. 

Normally after a Pred. taper I would have at least a month of good days and energy. However, that time I actually became even more fatigued and other flare symptoms increased. I kept getting more and more symptoms (profound fatigue, no energy, GI problems, cognitive issues, swallowing issues, diarrhea, nausea, just horrible, insomnia, nightmares, yet inability to stay awake during the day time). I had just moved and thought maybe I had moved into a "sick building." I stuck out the Cellcept hoping for an improvement. I even increased the dose after a month. I just kept getting worse.

After 2.5 months I got an abscess and had to stop the Cellcept while I was on antibiotics. Within 2 days of stopping Cellcept, I was already improving. I was still fatigued and had no energy, but it was an improvement from being on the Cellcept. My GI symptoms improved. Everything improved. So I knew right away that the Cellcept was making me markedly worse.

So, while it may be just a "normal flare," it may be the Cellcept.

You could try sticking it out for a little while longer to see if the symptoms disappear (maybe it is the flu or a virus).

Personally, I would not go on Prednisone. I think going on Prednisone will confound your ability to sort out the cause of the worsening symptoms. On Prednisone, your symptoms may improve and then how will you know if it is a flare or if it is the Cellcept. The Pred. may mask the Cellcept side effects (if it is the Cellcept causing this).

Before I went on Rituximab I was in a flare but I told my Rheumatologist that I did not want to take a Prednisone taper and then start Rituximab because I would not be able to distinguish which improvements were from Prednisone and which were from Rituximab. She agreed with me.

I am not saying that your symptoms are definitely from Cellcept. But, from my own experience, Cellcept caused me to have very bad side effects and caused me to feel worse than I had felt prior to Cellcept. I felt like I was in the worst flare ever when I was on Cellcept.

I agree with the others to talk with your Rheumatologist about this.

[Judie P]

You sound like me when I am really anxious and stressed.  It could be the medication and the added stress is making things worse.  I am not a doctor, but I can tell you when I started to de-stress, the weak legs, arms, pain, gums, teeth and lip burning all stopped.  Your doctor may say you are anxiety ridden and it is all in your head or your doctor will tell you that you need to de-stress.  I had a year of chronic illness counseling and one thing I learned was to listen to my body.  Every time it had a flare up, I would recognize it and continue to work, knowing it was just symptoms.  I feel for you.  I was where you are at a year ago.  It does come together after a while and you can relax.  May that be soon for you!

[irish]

I am so sorry that you are feeling so terrible and in December of all times. I guess the first thing I would do is call your doctor. Sometimes a person can quit a new med for 2 weeks and if you improve there is your answer. If you don't improve it is more likely a flare.

It really messes with our head when we are trying to start new meds and everything comes at us from all directions. We need to visit with our doctor and share our confusion and fears----cause there are a lot of fears when we go on these meds. It take a lot of faith and trust to endure these meds and thankfully a good share of them work for many people.

Hang in there and things will improve. It is hard to believe that but these darn diseases come and go and drive us crazy. I will keep you in my prayers. Keep us updated on how things are going. Irish