I was diagnosd with GCA in Sept and have found clopidogrel and hydroxychoroquine with pred at different strengths gave me too many side effects. I recently had an infusion and was then put on 15mg pred and 250 mycophenolate and now 12.5pred and 500 mycophenolate. Once again, although for the first day I was managing - when the pills kick in I have a brain fog and all that brings on but it clears as the pills wear off.But now its with me all the time, my eyes feel swollen and sore as well as my face and I want to stop taking either the mycophenolate or the pred. It is the weekend so there is no-one to contact and the Consultant has remarked that she can be of little help and it is time to get another opinion. I'm happy to do this but it all takes time and I get worse daily. Has anyone been in this position nd how did they cope? I have no underlying symptoms and always been fit and well.
Mycophenolate and pred.: I was diagnosd with GCA in... - PMRGCAuk
Mycophenolate and pred.
Poor you! These things always happen at the weekend don’t they? You can’t suddenly stop Pred - it always has to be tapered. My guess is it is the Mycophenolate or maybe the combination. I wonder if a Weekend Pharmacist would be able to advise you? I know that Methotrexate can just be stopped and it performs a similar function to Mycophenolate, but you have to have advice, the Consultant can’t just abandon you mid treatment. I would be seeking a referral to another Rheumatologist and seeing my GP as an emergency appointment on Monday. If your symptoms worsen, I would go to A&E, it could be an allergy. It is not in the common side effects of either drug. Good luck!
thank you. i am in the middle of a panic attack at the moment .
oh ragdollcat4! I’ve just seen this. Panic attacks are so horrible. All the fear and uncertainty and the effects of the drugs themselves will induce them. I had a horrible phase of them when doing a stressful job. I eventually learned to relax my muscle groups from head to toe, not forgetting the inside of your mouth. Breathing steadily is very important too. I had a friend at the time who breathed into a paper bag. Once I realised that I could bring myself back down again, I wasn’t bothered by that early feeling of one coming on. They lost their potency. You may need some help or a good CD.
My trigger was something worrying me on the back burner that I was afraid to confront. Mindfulness classes taught me to enter all sensations without fear - including pain. 💜
I have got grip again - thanks. I belong to the era of the beginning of the National Childbirth Trust and a great deal of what we learnt was based on things like mindfulness and how to cope with big contractions so I try to bring it all back to mind ! (not all!) and put it into practice, but it's hard. Your concern helped.
I am glad it did. Are you a midwife and or a mum? 💝
Hi ragdollcat4, I too am on pred and mycophenolate (and drugs for other things). However I have PMR not GCA. I am not liking the swollen eyes etc as could be a reaction to the drug or fillers. I would stop taking mycophenolate and go back to pred dose you felt ok at. Then speak to Rheumy after the weekend. However, if reactions that could be allergies increase its a and e.
I will explain my relationship with mycophenolate but above advice to stop and if no relief seek medical help applies!
The first thing that struck me was the fact that you were reducing pred while building up to the requisite dose of mycophenolate. I was advised to stay on same dose of pred for the 8 weeks it took to get it to 1gx2daily. So it surprised me that you were reducing. It was explained to me that once on Full dose of the steroid sparer (mycophenolate) the reduction would start again. Also I was told that if I had a cold or Inge toon or any issues to stop and seek advice.
I took 3 months to think about whether I wanted to do a dmard but decided to commit 3 months to see if possible. I have got to say the when I was at the lower doses that was capsules of 250mg of mycophenolate I felt horrid. I was fatigued, very foggy and just yuck. No symptoms of potential "allergic reaction" though. Then I hit 750mg twice a day and the side effects stopped. The capsules were only 3/4 of dose and I think I did have an intolerant if the fillers. Been on 1g twice a day for 2 years and no side effects that I have noticed and reduced from 15 to 6mg with no flares. BUT who knows whether that might have happened in second and 3rd years of PMR.
So the take home message is stop mycophenolate (it can be started again if you want and pharmacist says it takes 4 or 5 days to reduce in system and I have missed doses for 4 days and gone back to full dose no probs), up pred to pre mycophenolate level and speak to Rheumy asap. So good luck Nd feel better.
I had read that it was possible to stop taking mycophenolate, as you say, it seems to take 4 to 5 days to reduce in the system, so I have time to get help on Monday (I have a call booked to the GP) I stopped it this morning and although it has cleared the brain fog i am having a panic attack. Perhaps it is the pred 12.50 that I have taken because I have really taken on board the need to taper slowly.
Thank you for your thoughts I find it so useful and helps me cope.
Is there a specific reason why they started with all the dmards so early. For me it was due to diabetes. Which was impacted by low dose pred. A steroid Soarer was used to try and get into lower pred. Although initially it was touted as replacing pred eventually, the Rheumy' has suggested I may be at 6mg for some time to come. I am ok with that.
Cell cept or
Mycophenolate caused me huge problems with my immune system
I stopped it
And pS you are only 9mths in...you know the issue. Too fast of a reduction too..
So common. The rush to reduce. Terrible.
What on earth is the matter with the standard approach of pred for GCA at a sensible dose until you discover it doesn't work? Yes pred has side effects - adding in other non-proven drugs justs causes other problems. Often you just have to grit your teeth with pred for a few months, holding on to the knowledge that it is saving your sight and possibly your life until you are able to reduce the dose to a happier level.
Tell us more about the initial problems, doses of pred and so on.
Can't be much of a doctor to give up after 8 months either. Whatever so-called steroid-sparers they use (and there is no study evidence for mycophenolate) you still have to go through the high dose pred and reduction stage. Only high dose pred will reliably get the inflammation under control so rushing to reduce the dose only takes you back to the beginning, and in the end you often use more pred than you would have otherwise.
I have just 'come down' from a panic attack and so has my laptop which started to behave in a spiralling movement as I used it.(It was the laptop- not me).
You ask about initial problems. I had a very mild TIA in Sept 2018 which left me with GCA but again no joint pain. I was given 40mg pred to start with and I was on Clopidogrel 75mg -had bad side effects so stopped, tried Alendronic acid - had bad side effects,so stopped. Have been on Omeprazole all the way through.Pred appears from my notes to be up and down. Tried hydroxychoroquine -bad side effects. Trying mycophenolate, I didn't like the look of Methotrexate it seemed just like Pred with a hint of a chance of cancer thrown in and my gut feeling was that the problem lies with the pred - but who am I to know? Consultant suggests Infusion MMF Pred at 15mg then after infusion down to 12.5 mg so this is what I have done. She tells me that it may not be a cure, that I may have to live like this and that I am the only person who has been this difficult to offer a solution to! Then it was suggested that I might have a second opinion, so, way down the road I might get an appointment for second opinion. I find the the NHS has been sound and sensible following the general systems but once one finds oneself in the outer reaches with a question mark at the end it becomes a different story.
All the way throught this my body has felt fit, my blood tests have only once shown a slightly high protein level, apart from that it is exemplary. I make every effort to adjust my gut microbiomes and eat a diet that looks after my body.I exercise each day and always have and try and remain part of this changing world.
Once again your site has been an enormous help.Thank yu.
"I had a very mild TIA in Sept 2018 which left me with GCA "
It's the other way round, the GCA probably caused the TIA and you were lucky not to have a stroke. But I still don't understand - 40mg pred is a low dose for severe GCA and if they don't start with a high enough dose there will be serious problems trying to reduce. In which case - that could well be the source of the struggle.
Where are you? Is she offering you an expedited referral for another opinion?
I live in Hampshire. UK. The Consultant offered to find a second opinion in Southampton. I would go privately if I could do it at speed but even so I have had to book a phone call (tomorrow) to my GP in order to get that sort of advice as nobody seems to know how to go about it. I feel abandoned. I simply do not know enough about these things, it has never been my concern. This morning waking with a bad headache,which got steadily worse, being unsteady on my feet etc (all the usual side effects,nausea,dizzy muscle weakness)I decided to take 15 pred and 250 Myc.
but this is so random. I contemplated calling the ambulance but I can't see that this is going to be any answer, they won't know how to adjust the piils and a & E will tell me to go home. As I write this I still feel terrible and think that I will have to pull my cord (I live in sheltered accommodation and am 83)
Are you able to travel any distance? Rod Hughes in Chertsey comes highly recommended - all you do is ring his secretary! And I imagine it is much the same with anyone who offers private services. The trouble with taking a recommendation in the same Trust is they tend to stick together and not necessarily be objective.
drrahughesrheumatologyltd.com/
Thank you. I seem to be coming round again. I've stopped the mycophenolate on advice of GP and am back on 15 pred. Brain fog seems slightly clearer and panic attacks down to manageable levels. but I ended up pulling the cord for weekend help which sadly could only advise waiting till I spoke to my GP!
When I read the advice from yourself and Poopadoop, gifford7 etc., I realise how little I know about all this. and how complex it all is. So now I await my next drama/consultancy visit. (Chertsey is rather too far unfortunately.)
I agree with PMRpro that the GCA probably caused the TIA. The purpose of the clopidogrel, an antiplatlet agent, is to help prevent a stroke or heart attack, but you stopped taking it.
In my case I did have a stroke 20 days after GCA diagnosis. To help prevent future strokes I was prescribed clopidogrel [Plavix] 75mg, aspirin 81mg, and atorvastatin [Lipitor] 80mg. I had to stop the clopidogrel because of a bleeding problem; for the same reason reduce aspirin to 40mg; and continue atorvastatin at 40mg. 3 doctors have told me I must at least continue aspirin and atorvastatin to prevent future strokes. Your TIA was a warning signal.
mayoclinic.org/diseases-con...
"A transient ischemic attack (TIA) is like a stroke, producing similar symptoms, but usually lasting only a few minutes and causing no permanent damage.
Often called a ministroke, a transient ischemic attack may be a warning. About 1 in 3 people who have a transient ischemic attack will eventually have a stroke, with about half occurring within a year after the transient ischemic attack."
My GCA has been successfully treated with pred only, tapering from 80mg, now at 5mg.
While in the hospital for stroke I did have an infusion of methylpred; 1,000mg/d x 3 days.
mayoclinic.org/diseases-con...
"Doctors use several medications to decrease the likelihood of a stroke after a transient ischemic attack. The medication selected depends on the location, cause, severity and type of TIA. Your doctor may prescribe:
Anti-platelet drugs. These medications make your platelets, one of the circulating blood cell types, less likely to stick together. When blood vessels are injured, sticky platelets begin to form clots, a process completed by clotting proteins in blood plasma.
The most frequently used anti-platelet medication is aspirin. Aspirin is also the least expensive treatment with the fewest potential side effects. An alternative to aspirin is the anti-platelet drug clopidogrel (Plavix)."
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