too much pain - PMR plus GCA.
Posted , 8 users are following.
Hi - have had Ankylosing Spondylitis for 7 years, PMR for 2 years and GCA as well now for 3 months. Was hospitalized for 2 nights recently with PMR flare and new GCA symptoms - my Rheumo warned me to watch out for severe headaches previously. Got down to 5mg prednisone since 2 years ago, ER put me on 80mg for the GCA and been tapering down tho still get bad headaches most days tho not as severe, consequently Pred dosage goes up and down according to severity of headaches and pressure in temples, scalp and behind eyes. I'm also on Palexia for pain from Spondylitis and Oxycodone if severe for flares. Just come out of a massive flare of all three - sometimes the pain gets a bit much and my mood drops but fortunately have a caring husband who is great support. Most of the time I have been using marihuana oil (which helps a lot) with my rheumo and gp's ok but in Australia it is not legal and where I get it from it costs about $200 every 6-8 weeks - been cutting back on the opiods as I have restrictive breathing issues since critical from pneumonia 5 years ago - opiods were suppressing the part of my brain that controls breathing (diagnosis after many, many tests by respiratory specialist). It feels like all this will never end. As we are pensioners, the oils continuing expense and legalisation issues have me worried. Is there light at the end of this huge tunnel for me?Would appreciate advice from PMR patients who also have GCA. Thankyou.
0 likes, 13 replies
linda17563 denise____84544
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denise____84544 linda17563
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EileenH denise____84544
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"Is there light at the end of this huge tunnel for me?"
I'm not sure what you expect - if it is "just" the PMR/GCA you are talking about there is likely to be an end - in most patients with GCA the underlying autoimmune activity burns out and goes into remission in up to about 5 years for most people. In the case of PMR it sometimes takes longer and a few of us have it for far longer, some 5% for life.
AS is a different matter, it rarely goes into remission as far as I know. Is the AS diagnosis confirmed with the right sort of MRI scans? If so, why are you only on opiod painkillers? There are 5 biologics which are approved for use in AS in most of the world, even the UK, and they would probably make a big difference to the AS symptoms. The opiods won't help the pain in PMR or GCA - only pred does that by reducing the inflammation and then you have to stay on a high enough dose for some considerable time and you don't reduce until the pain and symptoms of GCA are under control. It doesn't sound as if yours are and that you have got into a yoyo situation with the dose - are you trying to reduce too fast or with tooo big steps down?
In the case of GCA, there is now also a biologic that works to bring the GCA into remission - it is, however only recently approved in the USA and UK - don't know about Australia although I do know that one lady on this forum has been on it for difficult PMR and it has made a massive difference.
The biggest problem I can see in these medications is that the biologics used for AS may not be ideal in GCA - but that is something for the experts to work out.
The gist though of what I understand from what you have said in your post, is that your current doctors are not managing your conditions well. Do you have the opportunity to see others? If so, I'd say you should do so.
denise____84544 EileenH
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Hi Eileen, Thankyou for your reply. In Australia you have to fulfill certain criteria to allow to use biologics for AS. My Rheumo says I do not fulfil that criteria as yet. I was on the highest dose of anti-inflammatory and also Nexium to protect my stomach as I had had a stomach ulcer years before that was successfully treated. I cannot use the anti-inflammatory I was on then as I started having stomach issues tho I have stayed on the Nexium - under doctors orders the anti-inflammatory was stopped. He has put me on prednisone for the PMR and GCA and watched very closely as to how my stomach is reacting to it or not and doesnt want me on it unless very necessary just so that I can have some quality of life. I know that the biologics can be great but they do have bad side effects. When I had the multi-lobe pneumonia and in intensive care it was later found to have been caused by a rare toxic lung reaction to the methotrexate that he had put me on to treat the AS. So then that was stopped and he put me on sulphasalazine which I am still on - the AS affects most of my joints and also my spine. Hence my doctors are wary re trying me on other drugs that have bad side effects. I've gotten to the point of paying close attention to my symptoms over the years and how , if and when they progress. I also completed a pain management program that lasted 2 weeks which has been very helpful. And with using prednisone he is cautious as I could end up needing surgery for a perforated ulcer. I am due to see him in 3 weeks time - unfortunately I live in a rural region,4 hours drive from the nearest city and where my rheumo is and 60 kms from the nearest town. What is also frustrating is that there arent a lot of rheumos in Australia to choose from as compared to other fields of medicine. I dont mean to be making excuses, its just how it is. I will most definitely talk to him about what further steps to take re my treatments . My body just seems to be loaded with inflammation - I also try to pace myself when doing things at home - I do know that car travel of any kind is one of many things that can cause flares for me. I have put on weight with the prednisone so I have a visit to a dietician booked. The Palexia (opioid) I am on was suggested by a Pain Medicine Specialist. Anyway, thank you so much for the advice - it will be interesting re my next rheumo appointment.
EileenH denise____84544
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Yes - I have had people in large cities in Oz telling me how wonderful the system is and then see the downside for the people who live in rural areas. Which I suppose is probably the case in most places but in the UK you are never far from a big city. It is much the same in the US too - feast or famine and either superb or useless...
I suspect the risk of a perforated ulcer is not significantly higher with pred than antiinflammatories - but don't quote me on that. I also suspect that using intramuscular depot medrol injections might be worth considering - that at least eliminates the direct effect of the pred in the stomach.
Good luck
EileenH
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denise____84544 EileenH
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Michdonn denise____84544
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denise____84544 Michdonn
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Hi Michdonn,
Thankyou for your reply. I am going to see a dietician re going on a anti-inflammatory diet and I hope it will help relieve some of my symptoms. I am glad to hear that it is working for you and your wife - that gives me more hope.
Thankyou and best wishes.
sandy08116 denise____84544
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Oh dear - you really have the nasties, Denise. My late husband had ankylosing spondylitis - was constantly in pain. He was on Voltaren that gave him dreadful mood swings. Didn't help that he was an alcoholic to the end.
I have GCA (since December), now tapering off prednisone. Feeling almost normal except for dry eyes and slightly tingly skin, like after sunburn. Lucky too that I live in Auckland and well-looked after by rheumatologist and two local hospitals and a Vascular Diseases support group to refer to.
So far, fingers crossed, GCA has not progressed to PMR.
Wish you all the best, relief from pain and strength to cope while you are going through it all. Cheers
denise____84544 sandy08116
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Hi Sandy,
Thankyou so much for your reply. I'm sorry to hear that you must have had a rough time while your husband was alive . AS is certainly challenging for everyone concerned.
I do hope and cross my fingers for you that you dont progress to PMR. Through my research Ive heard that if you have one autoimmune condition, it is common to get another one.
With me, I will just have to get my head around the tapering of the prednisone now that I have GCA as well as PMR. I never used to get headaches and now most days I seem to have one. My husband keeps an eye on my temporal veins as when I was diagnosed with GCA my vein stood out the size of a writing pen.
Anyway, thanks once again, and I hope you are able to keep in as much good health as possible.
Best wishes, Denise.
EileenH denise____84544
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sandy08116 denise____84544
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I put on a high dose of prednisone till the CRP level dropped. From 76, it dropped to 4. The headaches disappeared, all that was left was temporal unease, but nothing developed.
Seeing the hospital rheumatologist tomorrow for my three-monthly check up. He - and my GP - say GCA is very treatable, very manageable and very little likelihood that there will be a recurrence. PMR is unlikely too. I know to some this sounds pie in the sky, but their management has been spot on.
Poor hubby, not only did he survive a plane crash (while in the RAF) and was told he would never walk again (but he persevered and did), he also had rheumatic fever as a teen, and after spending time in the jungles of Burma and India during WW2, had severe dysentery and duodenal ulcers and had a section surgically removed. Before he died, he wrote his own case notes, and left his body to medical research.