Help with choosing a medication

You  are so right Reeceregan that we have so much to deal with already when we havePMR, that we don't want more nasty side effects.  That is why I am trying to figure out which med has the least  side effects in  otjer PMR patients.  Please let me know when you do start prolia, what you think of the experience.  And have a wonderful trip to NZ

Thanks Padada. SSSOOOO excited for NZ. The trip was planned before the PMR so it’s been a bit touch and go as to whether I’d still get there, but my grandson is getting christened while we are there so just HAVE to go. The recent osteoporosis result almost did my head in. I’m a tough cookie though, which is why I think the drs agreed to hold off the Prolia till I return. I’ll certainly keep you posted once I start  it. 💪

How nice, congratulations on the grandson, so sweet.  I wish you the best for the trip.  Please let us know hw it goes.  You are a very brave tough cookie.  God speed.  MJ

Not always brave and not always tough. I’d say more like determined and defiant...to fight this the best way possible 🤞

Hi Sheilamac,  Ihad a dexa scan 3 year ago which showed some some osteopenia, but last month I suffered two vertebral fractures so now I know I have developed osteo.  These fractures are very painful asyou can imagine.  So now I really need to take some medication to build back my bones.  They all seem so scary to take , but I believe I better get on something very soon.  I hope to get some advice from others here on this wonderfull PMR site,. Thank you for asking.

Hi Shellamac,  I just go an order from my doctor for another dexa scan next week.  I hope I can lay flat to have it taken, since I am in a huge brace. Wish me luck;

sHi Pgolemy,  Yes, my doctor wanted me to take these drugs several years ago, but I was scared of them. And I still am really.  Last month , however, I suffered two fractured vertebrae and now I think I better start on something to protect the rest of my bones.  I wish I had started them sooner, but I didn't because of possible side effects.  Especially the necrosis of the jaw scares me.  My doctor said that only happens to one in 10,000. Also, I have so many bad side effects from the prednisone, I don't know if I can handle new dise effects from another drug.  But with the fractures now I have no choice.  Thank you for asking.  

I think you have made your decision Padada.  Take the drugs and see how you feel.  If they affect you too much I am sure your doctor will advise you to discontinue the teatment.  You don’t have to be on them for years if you don’t find they suit you.

Constance.de ,  What wonderful advice.  Very practical and makes a lot of sense and it is something for me to consider.  Honestly, I really never thought of it that way, probably because I read the side effects of these drugs and they influence me negatively.  But, as you say I have almost no choice at this point, so I must adjust my thinking and I like your thought about it.  I will tell you that I am one f the people who has experienced so many of the prednisone side effects that I am gun shy so to speak..  I have had thrush, lost 4 teeth, lost a lot of hair, moon face (gone now),indigestion, and more. So I am trying to search for a medication that at least some of us with PMR have taken successfully and did not have more bad side effects,  I know this will be an individual thing, but it can't hurt to start with one tht we here on this site have had a good experience with.  But you have given me a new way to think about this subject, so thank you.  

It applies to everything Padada. I have been on steroids for over 8 years. With 2 sorts I had no side effects I was aware of, then I was switched to Medrol for about 9 months - it was awful: I gained weight, had muscle wasting, my hair was like a brillo pad, I grew a black beard! It didn't even stop the pain well!!! Then I was switched to Rayos/Lodotra - fantastic. Lower dose, no side effects. Lost all the weight, hair back to normal... But at no point did I feel it wasn't worth it. 

But others take Medrol and are fine. Others take pred and are not. You only find out when YOU try it. And you can always stop.

Padada I should have read all your posts before commenting earlier. I didn’t realsise you already have fractured your back. I’m so sorry to hear that, it’s my worst nightmare at the moment. Touch wood,  I am one of the lucky ones so far, no breaks at all, just torn ligaments in my foot beginning of  November ( which is why they checked a dexa scan. In hindsight dr said they really should have done one pre-pred ).  I was in the same mind frame as you, started on 50mg pred 7.5 months ago and managed to whittle it down to 9 so far but not without side effects. Have followed a supplement and anti- inflammatory diet, excercises when I can without overdoing it...I did everything right. Now  osteoporosis with t score of -4.  That’s classified as severe. And I’ve had it a long time.  Don’t cough, don’t bend, don’t twist, BUT definitely do bone strengthening resistance excercise. Tell me. how do you do those witnout  bending or twisting??..🤦??? My antii-inflammatory diet has to change to a calcium enriched diet....the totall opposite 🤦???. So...more questions and confusion. Will my PMR flare, will I have more pred side effects, which is worse, the PMR or the osteoporosis, which drug will affect me the worst, do I really want to introduce another one when I’m a staunch “ get off the pharma drugs asap”  and  

“ be healthy “advocate. 🤦???🤦???🤦???.  Let me tell you what changed my mind and excuse me if I’m blunt, but I’ll say it to you as my rheumy said it to me when I said I didn’t want to start Prolia. “ you have a 25% chance of dying from a fracture, a 50 % chance of being permantly disabled and needing either a full time carer or being in a nursing home, and a 25% chance of recovering enough to have some form of reduced mobility that will affect your quality of life”. He said it to drive the point hone and it worked. I’m only 62, just retired last year, and have many plans ahead. They do NOT include being less mobile or worse.  I’m so sorry if this is a bit too “in your face” but it drove the point home and he knew he had to be blunt to,get the point across....I can be strong willed at times. 🙄 I then asked him why Prolia and not Fosamax or one of the others, but this is a drug  that coats the bones as well as build them up I believe, with an 80% bone improvement rate. It is an injection every 6 months over 3 years, given by the GP,  others are either weekly tablets ( who needs to carry more tablets!) or annual injections over 5 years. Yes, they stay in your body for a few years afterwards but you can plan for,that and be aware, and remember they are getting OUT of your body at that point. I was sent for a dental checkup as well, prior to Prolia, as you can’t have any major dental work while on them, get it done now. Full X-rays showed root canal therapy would be needed in the not too distant future on a back tooth but no guarantee the tooth would survive for the next 3-5 years so out it came. No problem, no pain, no bruising, no issues. While I’m definitely not looking forward to my Prolia journey, I know it Is probably the lesser of the evils. And from research would prefer Prolia than the others, but also it’s the one I need for the severity I have...I’m pretty far gone I believe, and nothing I’ve done naturally or health wise has had much of an effect. My risk is why too high for me to muck around any longer. 

So. I will definitely keep you posted, and please also keep everyone on here posted as to what you decide and how you go with it all. None of us asked for this, but keep positive above all else. So many others have it so much worse and this is not cancer, we can come back from it. I have two mantras. “ I am not what happened to me, I am what I  choose  to become” and more appropriately “ the pain you feel today will be the strength you feel tomorrow”. Works for me. 💪💪💪

Should have  added that I’m also on aspirin as well as pred. That’s because of GCA as well as PMR, , keeps the blood pumping properly. With the tooth extraction I expected bleeding and bruinsing.  Got nothing. 👍

Don’t mean to laugh but you’re Medrol side effects reflect my Panfracorte side effects exactly. Except my black beard is on either cheek!  When I had the temeral biopsy they shaved a small section of my hair and boy oh boy, is that “Brillo pad”hair as it grows 

back! And much greyer ....damn it 🤦???

The latest recommendations for GCA are removing the aspirin - there is no evidence its benefits outweigh the associated problems. Just or info.

Mine couldn't be any whiter than it is - so why was the facial stuff black????? Don't mind you laughing - such a relief to find I'm not the only poor sod...

I mentioned that to the rheumy last Thursday ( he must be sick of me going in telling him his job after I read all these posts, in fact I actually apologised for “doing his job for him”. Luckily he laughed...or maybe it was a snigger 🤪. He left it up to me, he said he didn’t mind either way, but said it wouldn’t hurt given GCA and now Prolia. I asked what caused my easy bruising and bleeding  and he said pred so I thought ok, if no harm done stay on it.  What do you think?

I am still blond with grey roots that only need a touch up every 7-8 weeks ...so the black hairy cheeks are quite stunning. ..NOT. Went for the touch up last Friday before my NZ trip next week and she offered to dye them for me as well....🙄

EileenH  , I surely can relate to your side effects when on Medrol .  Those are the same ones I experience on prednisone! Ugh.  I never thought to ask for a different med.  I don't even know if we have any alternatives here in US.  I am going to ask my doctor Tuesday since I have an appointment that day.  Thank you for giving me that idea.  Do you have any opinion on hydrocortisone.  I know we have that available here. but it was never offered to me for Pmr symptoms.  , 

Hair is a strange thing when on pred.  I was almost white (which suited me to the ground) now, almost 3 years later, it’s going dark, a sort of light grey mixture with dark ‘streaks’ (I used to pay a fortune for ‘high lights’ when I was young.😀

I want my white hair back!!

I'm pretty sure you can get medrol (methylprednisolone) in the USA and most people don't have side-effects from it - as I say, everyone is a bit different in how they respond to the different lots. Hydrocortisone has a bit of a reputation for side effects - and you have to take it twice a day which is a bit of a pain - but everyone is different!!!! You just have to try.them and see.

How strange - mine is going blond because of the sun on the bit of colour that is left. But no darker.

The aspirin is up to you - though as I say, there is no evidence it helps significantly.

Mad, isn’t it?  I don’t know anyone that has gone from grey/white to brown.  I hope it stops. I’m 78 and I don’t think anyone would believe I’m not colouring it.

By the way,  I know you have a very healthy life style/diet, but do you take any additional vitamins?

Wow, Reederegan,, I really appreciate all the good information you shared with me.  So kind of youto do so.  I know your words came from your heart.  It is a special blessing to be able to talk to someone who has PMR and is able to cope with it and also help others .  I have reread you post several times because it lifts my spirits and gives me hope.  Thank you again.  

Take vitamins? Me?? Nah - except for vit D.

Thank you for sharing your experience with switching meds. It is encouraging to know that you made itthorugh some changes and found out the best med for yourself.  If you can do it I can do it.  

​When it comes to trying a med to build my bones, it seems that Prolio and Reclast are the two my doctor wants me to consider.  I have to chose.  Both have side effects of course. I believe that :Prolio may start the bone building sooner than the Reclast, but that may not be true.  However, I usually trust medications that have been on the market longer and I think that would be the Reclast.  I wil have to do some rsearch on both of them and then decide.  Please share with me if you have an opinion on either of them.  Thank you for all your faithful help over the years.  Many people on this site appreciate your knowledge and concern.  I do too.