I've had PMR for almost a year, but the prednisone (and necessary PPI) were so badly tolerated that I've now tapered to no meds at all. I have a very high pain threshhold and can live like this for another year or two or three. But am I more at risk for GCA after only 5 months of prednisone? MY GP doesn't think so, and it will take 6 months for me to get an appointment with a rheumatologist. Is my risk still only 15-20% or is it elevated without having taken prednisone for a longer span of time?
(More info, but skip this if you want. 15 mgs. of pred took the pain away completely after 5 days, but my digestive system said to please stop. I took 5 mgs. for 2 1/2 months, then 2 1/2 mgs. for another month, then 1 mg. for a month and then alternated 1 mg. and nothing for 10 days. The pain came back, of course, but nothing like as disabling as it had been. I can function fairly well, although not completely normally. I have tried different PPIs, but even the 1 mg. dose was causing me problems at the end. I would really rather not take anything than to tear up my tummy. My doctor is happy with this approach, but I'd like to find some reassurance from scientific studies that show my GCA risk isn't higher. I cannot imagine taking 60 mgs. or more of prednisone when 1 is enough to set me off. Thanks for reading all this!)
I don’t see that putting a figure on the risk is helpful, because if you’re ‘the one’ that’s all that matters.
Unchecked inflammation can potentially wreak havoc all over your body. I’m surprised your doctor is ‘happy’ with this, but it’s not his body, and it’s probably written in your notes that you’ve declined treatment.
The ranitidine was useless. And my doctor (she's a she) has agreed that, for now at least, the prednisone may do more damage than the inflammation. I cannot tolerate any NSAID, in any form. A coated baby aspirin, taken with food, will set me off. Prednisone, every day, is so much worse, plus the effect seems to be cumulative. I felt so much better just three days off the meds. Pain I can handle, but if I get gastric bleeds from the pred, then I don't know what I'll do. However, if it increases the risk of GCA, then maybe it's better to steal from Peter to pay Paul. In other words, suffer from a lower dose of pred now to avoid having to take a much, much larger one for even longer.
(Thanks for the quick response. I feel so lucky to have found this forum, with all its super-helpful people!)
I was the same but coated Pred was the solution and I just took Gaviscon Advance at night if I needed it. The cost was the same because they weren’t having to prescribe the acid meds alongside and I bought my own Gaviscon.
Hi, I wanted to try alternatives to Steroids so, against my Dr's advice, I went to a qualified herbalist and an acupuncturist. I take Golden paste for inflammation and have never taken Steroids. My blood results reduced to near normal within 2 months and have stayed that way so I still have PMR but at a manageable level and still take herbal tincture made especially for my symptoms. I can't take aspirin either and did not want to long term side effects of steroids. I may have been lucky, but do consider it. Goosd luck Owlcroft
Have you had investigations regarding GI sensitivities? Enteric coated meds do not disperse until they have past through the stomach. Usually that prevents Gi trouble. If I was still having trouble taking gastric resistant/enteric coated pill I would want to.know why. Of course if it's more that your body can't effectively manage pred itself that's a different story.
Ranitidine works fine for my acid reflux/GERD/indigestion. that I took ppi' s for for 15 years. Sorry they don't help you. I do have to take the full dose when my tummy kicks off.
Regarding the risk of GCA. I understand that the chance of getting GCA when you have pmr is increased but I don't know the exact figure...by 7x sticks in my mind. For me, if there's a 1per cent chance I am not risking it. My sight too precious. Good luck!!
The medical literature says there is a 7-fold higher chance of untreated PMR progressing to GCA compared to managed PMR. I'm sorry - I can't give you a reference, I was told the figure by my own rheumy who is a world authority in the field and he doesn't actually specify the ratio in a paper where he mentions the higher likelihood.
I had PMR for 5 years pre-pred, it was only ever diagnosed as PMR and it responded extremely well to 15mg but the consensus is that I almost certainly had/have extra-cranial GCA, sometimes called large vessel vasculitis. I did briefly have signs of cranial GCA (restricted to head only) with jaw claudication and scalp tenderness but which both disappeared after a few months and which haven't returned since being on pred.
It is a higher risk - but it is not inevitable that it will progress to GCA although it could be GCA at this stage but not causing cranial symptoms. Without PET imaging it is difficult to day although if it were extracranial GCA it might be seen in ultrasound of the brachial artery. That will require a referal to a rheumy though.
If you are unable to tolerate oral pred because of gastric issues - why are you not being offered depot methyl prednisolone injections as mentioned in Recommendation 5 here:
It is a relatively new concept but I know a couple of people whose PMR has been well managed thus and one whose GCA was managed with depot injections for similar gastric problems to yours. It may work - although as Poopadoop says, if the issue is the presence of pred in your body it may not but you can't tell without trying I suppose.
Here is a sobering study that shows it’s not a clear cut off in diagnosing one or the other and that what you see is not just what you’ve got. The introduction under the abstract give you some stats on PMR going to GCA.
Thank you! That's exactly the type of thing I was looking for to take to my doc to see what we do next. Our tiny town is lucky to have a hospital (with one doctor and two PA-Cs) and they're all in general practice. The nearest specialist is over an hour away and my doc and I need to know exactly what facts to present and what questions to ask if we go that route. This article is extremely informative and helpful. Thank you again!
And thanks to all of you who responded. We all react to adversity in different ways, but trying to help others is the best way to cope with our own problems, isn't it? I truly appreciate all of you here on this forum and wish you everything good!
"GCA and PMR commonly overlap. PMR is observed in 40–60% of patients with GCA at diagnosis, and 16–21% of patients with PMR may develop GCA, particularly if left untreated [2]. Modern imaging studies using vascular US and/or 18-fluorine fluorodeoxyglucose PET/CT (18F-FDG PET) have demonstrated that at diagnosis, up to 80% of GCA patients as well as one-third of patients with PMR have subclinical LV inflammation. Patients with treatment refractory PMR commonly have cranial and/or extra-cranial arteritis on imaging [5–11]."
The pertinent paragraph is this one: "The use of arterial biopsy in patients with symptoms of polymyalgia rheumatica alone is currently under debate. Biopsy studies indicate that 15 to 20 percent of these patients have histologic lesions consistent with temporal arteritis.14 However, their clinical risk of developing visual complications is low compared with the risks that are associated with high-dose corticosteroid therapy. It can be argued that these patients can be safely managed with close observation for development of signs of temporal arteritis."
Appointment with my doctor next week to discuss what to do. Thanks again!
"According to this concept, the ratio between systemic and local vessel wall inflammation determines the clinical subset, with PMR (as the clinical syndrome of systemic inflammation) at one end and vessel-destructing GCA at the other end of the disease spectrum. Clinical and imaging observations support this model:[13,14]
Almost half of GCA patients complain about PMR symptoms; Up to 20% of untreated PMR patients may develop full-blown GCA; 18F-Flourodeoxyglucose (FDG)-PET studies show inflammation of subclavian arteries in PMR patients with negative histology of temporal arteries."
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