PMR pain
Posted , 11 users are following.
I’ve had PMR for about 2 years now (I’m 60 feeling like 80). I take Methotrexate (6 tabs once a week). I was taking prednisone but have quit. The bone loss in my mouth is messing with my teeth. I’ve lost a bridge & am trying implants. The 1st set failed & posts were removed because of the bone loss. I’ve had a bone graft & due to bone loss I’ve promised my surgeon I wouldn’t take the prednisone. We’re waiting to see if it will work but my dental surgeon is not optimistic about the results. My flare ups are increasing & lasting all day. I’m just wondering if anyone knows of a non-steroidal med without the side effect of bone loss for PMR.
0 likes, 10 replies
celia14153 janetj
Posted
Hi - so sorry you are having such a rough time. What dosage did you get to with the Pred and did it help at all? I felt very rough pre Pred but much much better now! Still on 15mgs but planning to taper. I imagine your current pains are due to you stopping Pred without tapering. I’m sure people here will advise but a lot depends on your indidual situation. Good luck 🤗
janetj celia14153
Posted
I've been on pred since I was diagnosed a couple of years ago. I'm very familiar with tapering. I start at 15mgs & very slowly taper down then the pain/symptoms would return & back on 15mgs again. Pred helps so much & at the same time is so bad for you with continued use. If the my dental implants don't workout then I will be back on it. Thanks for your reply & good luck to you too!
Anhaga janetj
Posted
What a shame you are having such unpleasant dental problems. I haven't heard of anyone having such dire effects in the mouth area from a moderate to low dose of pred, which is what is normal for controlling PMR although I think a long term of higher doses can sometimes be destructive. Are you taking any other medications beside the mtx? What advice have you received regarding caring for your bones?
Unfortunately mtx is only useful for PMR in that it helps some people reduce their pred dosage. It can't replace prednisone. There is no other medication readily available although there is an expensive new drug, tocilizumab, which can help, but is not approved for PMR treatment everywhere (it is approved for rheumatoid arthritis and usually now also GCA), and even in countries where it is being used to treat PMR it may not be covered by drug plans.
As you are no longer on pred, why is your doctor still prescribing the mtx?
janetj Anhaga
Posted
I'm learning with my dental problems that the meds I do take have side affects of bone loss. I've also learned that the meds cause dry mouth & that doesn't help the situation either. I haven't spoke to my doc about stopping the pred...dumb, I know. I will let her know. Prednisone works wonders but I trying to stop anything that causes bone loss for my implants to work. Thank you for your thoughts.
EileenH janetj
Posted
I really do think you might be better when reducing your pred dose to identify the lowest dose that works and then stopping your reduction there. PMR is a long term condition, the average duration of taking pred is just under 6 years. If you reduce too far and then go back to the beginning again at 15mg you are actually taking more pred overall then you probably would if you stuck at the dose that just manages the symptoms over a longer period. Yoyoing up and down isn't good for all sorts of things whereas a dose that is about or less than 8mg has no significant adverse effects that would possibly happen even if you weren't on pred - it is the same sort of amount of corticosteroid your body makes naturally and which the body requires to function at all.
https://www.medpagetoday.com/rheumatology/generalrheumatology/66912
EileenH janetj
Posted
Methotrexate won't do it for PMR - there is pred or there is Actemra/tocilizumab.
As Anhaga says, it is very unusual for pred to cause that much havoc at PMR doses - so is it possible that it was already a problem before PMR and pred? My cousin has a similar problem, never been on pred.
Have you ever been on a bisphosphonate?
janetj EileenH
Posted
I just looked up bisphosphonate & I'm going to email my doctor now. I appreciate the advice!
EileenH janetj
Posted
Sorry - not clear there what you mean. You don't need a bisphosphonate if you have jaw bone problems, it is a not unusual side effect of them.
Anhaga janetj
Posted
One of the nutrients which your doctor may not mention to you (hopefully you at least have been advised to take calcium and Vitamin D) is Vitamin K2. Other things which are very important for bone health include magnesium, and boron. If you can eat dairy, yoghurt is supposed to help the body absorb the calcium, much better than liquid milk.
Here is an article about the importance of Vitamin K2 for bone health, including dental/tooth health.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4566462/
What Vitamin K2 does is make sure the calcium goes into the bones, but unfortunately it's very low in the modern Western diet so may need to be supplemented. It's not the same as the Vitamin K1 we get from our leafy greens.
phyllis48183 janetj
Posted