Any advice, a few questions 🤔

[Poodleshrimp]

Aside from a healthy diet, and moderate exercise, what else does anyone recommend, when dealing with PMR. I take 9mg of prednisone, I try to eat healthy, and I walk a lot. But now, my thumbs are numb, most of the time, and now I get slight swelling in my ankles, and the back of my right hand. Oh, also does anyone think, or know if stress really impacts this autoimmune condition? After a year of steroids, I want an injection, which was suggested, but I am uneducated about it. The Doctor says, get off steroids.....But has not given me the injection option. I know this process is trial, and test, so any suggestions are welcome! Oh! and I pray a lot!

[piglette]

Stress impacts anyone and is definitely bad news if you have PMR. What do you want an injection for?

[Poodleshrimp in reply to piglette]

I may be misinformed, but I wanted an injection, that could possibly be nonsteroidal, I was told that exists

[SheffieldJane in reply to Poodleshrimp]

You maybe thinking of Actemra that has proved effective for PMR and GCA. This is delivered in a self administered injection and can help reduce the amount of steroids you have to take significantly. It is perhaps worth asking your doctors about it.

[piglette in reply to Poodleshrimp]

SheffieldJane is probably right about the injection you want. It is pretty well impossible to get it for PMR in UK but does seem some people can get it in US but it is a bit pricey.

[DorsetLady PMRGCAuk volunteer]

Hi,

Re your thumbs -has anyone considered carpal tunnel syndrome - know you’ve seen an acupuncturist (from another post) -

healthline.com/health/numbn...

[SnazzyD]

Hello, I can I understand your frustration and want for a fix. With autoimmune conditions it’s rarely a case that you find the cause, sort it and off you go. There isn’t a simple injection that cures it but as SheffieldJane says, Actemra might be what you mean. This is called a steroid sparing drug that helps to lower the Pred dose and likely not take its place. It also doesn’t help everyone but it may be worth a try. It does make you immunosupressed and has its own side-effects so it’s not a case of Pred all bad, Actemra all good. Unfortunately, PMR requires you to adapt your life around it, not that you get a treatment or therapy and get back to normal. Those who work tend to have to make changes in their work pattern to allow for rest and avoid long stints of activity or stress. I’m sorry to sound negative, but on the whole fighting it with fixes and trying to force a normal life as you know it is usually not productive. May I ask, when they started you (quite rightly) on steroids, what was their expectation? What did they tell you?

You mentioned a healthy diet, but healthy usually doesn’t cut it when you’re on Pred because it makes you get high blood sugar rises like diabetes. If you have diabetes, it can make it worse and if you don’t you can end up with it because your body can’t keep dealing with the high blood sugar. However, the good news is that you can really beat the Pred effect here if you cut out carbs such as pasta, rice, sugar, maize, potato and flours it really lessens these high’s. Fruit needs to be moderated but fats are ok if one doesn’t go mad. Keeping the blood sugar down helps inflammation too and keeping weight off helps the joints. Many of us have managed the Pred effect this way very successfully.

Did you ever get your thumbs checked for carpal tunnel problems?

[PMRpro Ambassador]

Stress DOES impact any autoimmune disorder, any doctor who says it doesn't is in denial!

There is no simple answer to PMR if that is what you have - I really don't know what injection you mean - there isn't "an" injection other than Actemra/tocilizumab which is an ongoing weekly injection which works for half of patients to get them off pred altogether, the other half continue to require a lower dose, about 8-10mg is common. It hasn't been approved for PMR anywhere because the clinical trials haven't been done, it is approved for GCA and some US doctors use it off-label in PMR if the patient can get funding. It is, like all biologic drugs, very expensive.