I was diagnosed with GCA in January.I am on 40 mgs of prednisolone daily with accompanying meds omeprazole, low dose aspirin, Adcal, Alendronic Acid, Statins. I am also taking Ursodeoxylic Acid (for PBC) wondered what symptoms you have experienced when tapering your dose of Pred? Each time they have tried to reduce my steroids, I have had symptoms such as visual disturbance ( flashes of bright light on the outside visual field of both eyes or sometimes one eye at a time and pain in my jaw when eating).
Has anyone had a similar experience?
My consultant thinks I may need to be prescribed immunosuppressants. Any information around tapering, these symptoms/ meds and likely timescales would be really helpful. Thank you.
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Skysey
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Welcome...I was just diagnosed last August. Prednisone is an immunosuppressant and did not do the job for me, my symptoms continued to rage. I was finally put on methylprednisolone and Actemra. Once the prednisone didn't help at 120 mg per day~ I was put in the hospital and given Medrol IV and started Actemra injections. When I was discharged I was taking 64 mg of Medrol per day in tablet form
You are RIGHT to be concerned and those would be significant symptoms to me. I'm glad you are paying attention to your body. I hope you follow up with your doctor.
I'm sure folks with much more experience than I will respond, but I'd take those symptoms seriously. 💗
Thank you so much for your help and advice. I have a telephone consultation with my Neuroopthalmologist this afternoon. I had one appointment early this year with a Rheumatologist at another hospital but have been transferred to the teaching hospital so all my care is under one roof. However, I am still waiting for an appointment with a Rheumatology Consultant. Almost 13 weeks now! Apparently I should have been triaged as urgent and seen within 4 weeks but was mistakenly triaged as routine.
My neuroopthalmologist feels that the original rheumatologist probably tapered my dose too quickly.
It is really interesting to hear about your experience. I will keep you all updated on my progress. Thank you again.
Please keep us updated for sure...you can see what caring and knowledgable people are on this forum. Their words have been so supportive and 'spot-on'. They have not only been there to kind of hold my hand some times but helped me be a better advocate for myself with my doctors. Do take care!!!
I agree with Grammy. You haven’t got on top of it yet and shouldn’t be reducing. In fact you may even need to return to a dose that takes care of all the visuals and the jaw pain and sit there for a good few weeks. You doctor must let it do it’s job. It must be hard to sort out what causes what with all those meds. I refused Statins and Alendronic Acid and didn’t persist with Omeprazole. Not on your other drug that I am unfamiliar with. Nor aspirin. Those symptoms are GCA though and it’s warning bells. If possible, I try to keep my prescription simple. GCA officiandos will be along later.
Thank you Sheffield Jane. I know it is early days in my treatment programme but it feels like I have been on this programme for ages. I was prescribed this range of meds from early on and I have been taking these religiously. I take AA once a week. I will ask the neuroopthalmologist about whether I need AA and statins as would rather not if they are not required.
With you about not taking Omneprazole and Alendronic Acid. I used to and after reading adverse reports stopped them and instead of the Omne went on to gastric resistant Pred which did the trick. Down to 2mg after a flare and feeling a few aches and pains but I'll persevere. Wish there was a real handle on this which ALL rheumys, GP's, health professionals would adhere to. My problem is that each, GP, physio, rheumy has totally different ideas on treatment, outcomes, dosages since I started with this nearly 10 years ago.
Good luck Skyse, come back soon and tell us everything is under control. Luckily there are some excellent people on here who will see you through.
With a January start date and on 40mg pred and your symptoms are not under control, that tells me your starting dose was too low - if they start you at 40mg and it does not work by clearing all the jaw pain, headaches etc they should have upped it to 60mg and see it that did the trick. 40mg-60mg is the starting dose.
They should not be even thinking about reducing your pred. I started on 60mg and within hours was symptoms free, it then took me 6 months to get down to 40mg and that was a very slow process and never more than a 10% drop at a time.
Aspirin was not given to me at all. I refused AA until I had a dexa scan, 6 months down the line, I did not need it, bone density was 97% and still was after 5 years of pred.
Omeprazole, one of the common side effects of that drug is aches and pains, just like as if you had pred. If you are taking enteric coated pred, that should help any stomach problems and there are other drugs if you need them. However a pot of Yoghurt and some food just before you take your tablets..........will probably keep your stomach happy.
Were you just put on statins when diagnosed of had you already been taking them?
What sort of Statin, as Simvastatin - side effect - aches and pains - there are others if you need a statin.
Did they prescribe Adcal - if so the rule is Pred for Breakfast and Calcium for lunch, they cancel each other out.
Finally as Grammy 80 says, pred is an immunosuppressant so your Consultant is way off the mark or did s/he he mean a steroid sparing agent? Most of which comm with more side effects.
Now I am not a medical person at all, just someone who had GCA for 5 years and in remisson for 7 so far.
I looked at your profile to see where you live and your profile does not say much, can you add to it please, it does help.
Others with more experience will be along, I am sure.
Thank you for your advice Jinasc. You have a lot of experience with 5 years with GCA. So glad you have been in remission for 7 years. It is interesting to know that it took 6 months for your pred to be reduced from 60 to 40 mgs.
I have never had major issues with cholesterol but was prescribed Simvastatin due to the effects of the steroids.
I think the consultant meant a drug such as methotrexate.
They prescribed Adcal. I was never told that they cancel each other out. I will now take it with lunch as opposed to breakfast.
I live in Greater London.
Thank you for all your advice and help. It is much appreciated.
I really wish that medics would not dish out, what I call 'just in cases'. I ran into problems with adcal, too much calcium, my minerals levels were never checked. So I dropped them all (a very personal decision and I would never tell anyone to do what I did) and said, OK, we will deal with a problem if or when it arises. Both GP and Rheumy were not best pleased but went with it. I also would insist on a Dexa Scan and if you need medication, look at the options on the Royal National Osteoporosis website and choose the one you want to take. If you do decide on AA, then see your Dentist first.
The stroke clinic my Cousin went to after having a small stroke........was the a bowl of porridge and a whole orange for breakfast everyday - her cholesterol level was down in six months.
Professor Dasgupta a leader in Research (he started this charity) says Methotextrate does little or nothing for GCA. It can and does sometimes help in PMR.
Finally, whenever you are given a new prescription or a change or if you want to buy OTC and perhaps try a Homeopathic remedy, ask your Pharmacists first..............they will check for compatibility.............they know more about drugs than any other medic. In fact make your Pharmacists one of your best friends.
As you were only diagnosed 3 months ago and were started at 60mg, I would say you have reduced too quickly which is why you are getting a return of symptoms when you try to taper.
What you really need is for your consultant to let you be on the level of Pred that you actually need! ...and that’s obviously more than 40mg.
How long were you on initial dose? That probably wasn’t long enough to get things fully under control.
40mg is the bottom end of the range for GCA and really only for GCA with no jaw pain or visual symptoms. Before adding an immunosuppressant (methotrexate probably, especially at present with Covid around) your doctor would be better advised to increase the pred dose first to clear out the inflammation that is obviously still lurking - had they done so in January, you would probably just have got to 40mg now.
You shouldn't have been triaged as urgent and seen in 4 weeks - you should have been seen as a medical emergency and seen within 24-48 hours while already on a protective dose of pred. And a study found that starting GCA patients on pulse doses of i.v. methyl prednisolone enabled easier tapering and overall a lower cumulative dose of pred despite the very high starting dose.
Thank you for this really useful information PMRpro. I had a flare with visual disturbance in January and was seen as a medical emergency. I was admitted to hospital and had IV pred infusions over 3 days. The recent visual disturbance related to flashes of light on my outer visual field, sometimes in both eyes and other times in one. I had a telephone consultation with my neuroopthamologist this morning. He feels it is more likely to be auras related to migraine although I haven’t experienced bad headaches with this visual disturbance. He explained the types of visual disturbance more associated with GCA. He told me that if I have particular visual symptoms, to go straight to the eye hospital. My neuroopthamologist has been very good. He sees me every 4 weeks. He has been pushing for Rheumatology at the teaching hospital to offer me an appointment to lead on my care. After a 12/13 week wait,I have heard today that I now have a telephone consultation with a Rheumatology consultant tomorrow which is great news as they need to coordinate my treatment programme.
Hello Skysey. Yes, I've taken Alendronic Acid in previous times - but I don't take it any more. I started having various teeth problems and my dentist shrieked when I told him I was taking Alendronic Acid, and told me to stop. Also, I have since heard from another doctor that taking Alendronic Acid is being closely monitored and, possibly, withdrawn so do ask your doctor/specialist to advise on the most current recommendations of this drug. Best wishes, Greenheath
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