I am taking 500 mg of MMF twice daily and will increase it in 2 weeks time, I am also on pred 8mg.
Have gradually become more symptomatic again, headaches, facial pain, blurry vision, achy muscles and fatigue etc. Has anyone else changed immunosuppressants and how did you manage your symptoms until your new drug started working?
I don't have a definitive diagnosis other than auto immune inflamatory.
Not my disease/medication Keyes - but wouldn't a normal answer be to have told you to increase the pred slightly until the new drug is at a high enough dose to work? The idea of the MTX and the MMF is to provide some suppression of the immune system to allow a lower dose of pred to achieve the same effect to avoid the long term problems of pred. Short term extra pred shouldn't pose a problem.
Hi PMRpro,
Have spent the past 3 months reducing my pred from 10mg to 8mg. I know that increasing the pred is an option but wanted to know if anyone had any other suggestions!
Best wishes
You can certainly fall into the "gap" when changing medication as mtx & MMF work in different ways, so it can take a little while for the new drug to take up where the other left off - if that makes sense! As PMRpro has said, drugs like mtx & MMF are regarded as "steroid-sparing" drugs. So many people fail to recognise that familiar friendly prednisolone can in fact be more harmful in the long term than the immune suppressing drugs. Whilst you can up & down your steroids without too much concern above 10mg, you do need to be careful reducing your dose the nearer you get to 7.5mg - which is about the same as your natural baseline cortisol production. But it is always advisable to consult your doctor before making any changes to tyour medication.
Hi John,
Thanks for your reply. I have medical knowledge so understand about the different types of meds and how they work. The MTX has been much better at controlling my symptoms than prednisolone, I would still be taking it if it didn't " wear off ".
I am reluctant to up my pred as it never gave me great symptom control, unfortunately if I drop the pred below 8mg then that makes me very symptomatic as well, I can't win really. The lack of definitive diagnosis makes it all the more difficult as well.
Will try to grin and bear it, I have recently completed a 3 month phased return to work and although I have reduced my hours the last thing I want is to go off sick again.
Best wishes
Keyes
No definitive diagnosis? Where are you being treated?
I have been taking MMF for a long time - 2.5gm a day at one stage. It has been good for me (I have WG) and I feel pretty well for an old codger. Unfortunately my ANCA remains stubbornly quite strongly positive, so I'm still at significant risk of relapse if I come off the MMF.
Hi John,
Am under a local rheumy but went to the multi disciplinary vasculitis clinic north of the border for a second opinion.
The problem is I have enough " markers " to suggest auto immune ( low C3 , raised inflamatory markers, equivocal ANA, anemia etc ) but nothing is definitive. The really upsetting thing is that it is accepted that my myalgia, arthralgia, fatigue etc are connected, but no one has accepted that my ongoing headaches, blurry vision and jaw/ facial pain are connected with my other symptoms. They say they can't explain them, even the vasculitis clinic. This is despite the fact that all my symptoms get better and worse together, and the headaches et al did improve with MTX.
I feel a bit of a fraud " hanging " around this and other forums but am constantly looking for that eureka moment when I will get answers!
Did GCA ever get a consideration?
Hi PMRpro,
Yes. Had a TAB ( negative ) and went to Southend on Sea ( disappointing ). Have classic PMR/GCA symptoms but they didn't respond in the classic way to high dose steroids including IV methyl pred, bit of a mystery really. Jaw claudication was so bad that I lost 8lb in 4 days, am still 14lb below my normal weight despite the pred.
Someone else wasn't impressed with there either - I suspect he may be living on his reputation! I have found another very open PMR/GCA specialist in the south. And some people don't respond to pred because of the mechanism for some reason. Strange.
Wish I had lost weight!
My husband who has WG has also recently switched from Meth to MMF. He has spent 3 years on different drugs and always has to respond by increasing the Pred then starting on the slow downward path. He's done his first 2 wks on 500mg twice daily and is now on 1000mg twice daily, the same as you and he has been able to reduce the pred, very slowly, now down to 10mg per day but his specialist advised against going any lower than this until the MMF has settled in so maybe in the short term you have to up the Pred and then start down again. Obviously your consultant should advise you. It's a long ol' process but good luck to you.
Thanks Nadine99. I hope your husband gets better symptom control and the MMF works for him. I am hoping it is going to be my wonder drug!
It's been an up and down 3 1/2 years as I suspect it is for most sufferers. You just have to do a bit of a balancing act, a bit up, a bit down. It's never going to be easy but I just tell my husband, do what you can do and don't try what you can't. It's very frustrating but at least while I'm digging the garden, he's doing the ironing!!!!. All the best to you
Hi there.
I just wanted to add that I get migraine type headaches and episodes of dysphasia and double vision. I've seen a neurologist who is adamant that these symptoms aren't related to my vasculitis/SLE.
Yet on methotrexate my symptoms have completely disappeared.
Don't feel a fraud. Sometimes these symptoms can't be explained by the doctors but that's not to say they don't exist or aren't connected. I'm very fortunate to have a more open minded and in fact wonderful rheumatologist caring for me. But don't feel a fraud. Your symptoms are real and an explanation and diagnosis will come. X
Hi Lupylass,
Thank you! It's interesting that my headaches and jaw/ facial pain don't respond to analgesia. I am like you, methotrexate does help my symptoms but only for 5 days, then I would become very symptomatic again, hence changing to MMF.
In many ways my Rheumy has been very good, he has tried to treat my symptoms and hasn't dismissed them. I saw a neurologist for 5 mins when hospitalised last year, he did a quick Neuro exam, didn't take a history from me and then pronounced I had no neurological issues.
A Prof that I saw at the vasculitis clinic wonders if I have an evolving SLE, but because my bloods are only equivocal no one is willing to say SLE is the definite dagnosis.
The bottom line is a tiny part of me thinks I am going mad, and these symptoms are psychosomatic. My rational self knows that isn't true but the fact that I don't have a diagnosis and that no one is prepared to take my symptoms as whole doesn't help.
Thanks again, so many kind people on this site, I don't know where I would be without this support.
Best wishes
Keyes
when I was put on mychophenelate after my second cycle of cyclophosimid,i thought it a miracle I felt great but puzzled as its supposed to take 3 months to kick in. then inflamed bleeding gums toothache where no teeth nose bleeds reminiscent of early wegeners. I persevered as new drugs can be funny.when every inch of me was stiff and aching terrible headaches from the crown of my head downwards mentally totally confused and lethargy like no other I gradually stopped taking them,i coudnt get hold of my rheumatologist for advice when I did eventually see him he said I had gone into spontaneous remission,my anka was right down after nearly 10 years this illness is still throwing curve balls
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