In labs. The pred made me sick so was switched to methylprednisolone and did better but kept getting superbug urinary tract infections on both. Now on 15 mg hydrocortisone for a month. No more hospitalizations for potentially fatal superbugs. BUT, pain at 15 is terrible. I was in hospital with a TIA TWO WEEKS AGO. THEY PUT ME ON 40 mg prednisone on top of my 15 mg hydrocortisone. Next day they put me back on my 15 mg. For two weeks can't bend, walk, get up. Terrible pain, depressed and gained 16 pounds on the hydrocortisone. Is there hope with this disease? My doctors are sick of dealing with all my idiosyncratic reactions. Please help. Thanks.
Jen
For 75% of patients it does burn out in anything from 2 to 6 years - and Italian study found about 1/3 of patients still require pred after 6 years.
I gather you are in the USA - is there any possibility of getting/tolerating tocilizumab/Actemra? There have been pilots using it in PMR, it has been shown to help in GCA in a Phase 3 clinical trial and will be approved in the near future.
I know where you are - I had PMR for 5 years without any medication as it wasn't diagnosed.
The weight gain - and possibly the inflammation - can be helped significantly by eating a very low carb diet. It is worth trying.
I'm sorry you feel so ill. It's possible that the heavy duty antibiotics you've had to take to deal with the superbugs have caused an imbalance in the flora and fauna which share your body and are very important for maintaining health. Please ocnsider eating various kinds of fermented foods - goes way beyond yoghurt. If you aren't used to fermented foods (sauerkraut, kefir, and a number of others) be sure to eat only a very small amount at first while your body adapts and the microbes repopulate your body. This may help you as you recover. I hope so. Hugs. ❤
Hi, Eileen
yes, I'm in the US. They won't use a biological because the doses don't come small enough and I am a nonmetabolizer so they accumulate in my system. I am now doing a low cho diet. Not fun but worth it if it helps.
why are so few people on this site on hydrocortisone? Seems odd seeing both my CO and CT docs were anxious to get me over to the HC.
Thanks, Anhaga. I'll try. So far I haven't gone beyond sauerkraut, pickles, and yogurt. Thanks for the moral support. This is tough.
Hugs back.
Eileen,
Are you in remission now?
Because HC isn't routinely used for PMR. The main reason is because the equivalent size of dose is higher and at the sort of levels needed for PMR would be more likely to cause adverse effects. It would also have to be taken at least 2x daily to control the inflammation for 24 hours, for most people the antiinflammatory effect of pred lasts 24 hours or more.
HC is used for some people who don't tolerate pred and at low doses in the hope of persuading the adrenal glands to function again better. I think it is also more expensive for equivalent doses.
I'm in drug-induced remission - he pred keeps the symptoms under control but every so often the PMR reminds me it is still very much there!
Good for you! \but I don't thinbk pickles give you the same boost as, say, sauerkraut and its relatives do. I understand that kefir has a much greater range of microbes than yoghurt so it could be a good choice if you like it. I'd avoid the sweetnend kinds, though. We used to buy both sweet and plain and mix them. Now we drink the plain straight up!
Glad you are at least temporarily comfortable and hope it burns itself out for you. Thanks.
Thanks for the tips. This weekend I'll try to expand my fermented repertoire. Can't say I'm looking forward to it but I'll try anything to get out if this,pain.
How will they try to wean you off if not with HC? Is your esr and crp still high?
Kefir took a bit of getting used to for me, that's why we started with the sweet kind, but now I really prefer the plain. There is a young couple at our farmers' market who make all kinds of fermented vegetables, so we are getting used to experimenting. I tend to just add a tablespoonful to an ordinary green salad or as a bit of a garnish to the plate. Also there's a fermented tea which I can't name because it gets moderated, don't know why, but it is also supposed to have some health benefits. The main thing to pay attention to if, unlike me, you don't have access to locally made products, make sure what you buy has not been heated or pasteurized, because that wil kill the healthy microbes. One is wise to get used to the new food very slowly. Just a small spoonful at first, but many days a week.
Thanks, Anhaga. Really appreciate all the tips.
I have never had elevated blood markers except for ferritin. For most patients on pred reducing the dose to zero slowly is enough to encourage normal adrenal function to return. Of hundreds of PMR patients I have come across there are perhaps 3 or 4 who have had problems getting their dose of pred to zero for adrenal insufficiency. Some doctors switch their patients to HC once they get below about 5mg but it isn't always done and isn't always needed.
CRP 44, ESR 25. Today they put me back on methylprednisolone to try to suppress the inflammation since my markers are going up. Once under control AND when they get me down to 2.5 mg methylprednisolone they will do cortisol levels and see about trying the H/C route again. Meanwhile, I am up twenty pounds again in two weeks flat. H/C was brutal with the fluid retention and then the 40 mg prednisone in the hospital. Yikes. Looking bad and that is top of the mind awareness if I look in a mirror but not my priority at this time. Quality of life first and I will deal with the additional weight daily on this march back to health and total recovery. My doc did say today that if I did twenty minutes in the sun a day ( joke: always rainy and overcast here) that I should put sunscreen everywhere except the one place like an arm. Then the next place leave out the other arm for exposure while covering yesterday's arm. Interesting.