Scared of drugs. Take pred as no choice there. Now waiting for approval for actemra.

[Chopin002]

After much research I think the side effects are extreme and I am not willing to give it a try. Has anyone else rejected this treatment. ? I do ok on pred so I think over time the GCA will burn out As I think the PMR already has. Over the phone I also agreed to a yearly infusion of a biphosphonate as thought once a year would be better. Kind of do it and forget it. Now I believe I will reject this also. I feel bad not accepting help from the specialists, but the list of nasty effects is longer than my arm . What’s wrong with a slow decline off pred . Bone density -2.2 for spine. -1.7 neck. —1.8 hip. I have changed diet to only anti inflammatory foods and walk one hour daily and now 20 min. Cardio or weights. Feel well. 30 pred.

[SheffieldJane]

In my situation I was afraid of losing my eyesight with neglected GCA. I am aware of the negative effects of Pred having developed Steroid induced diabetes. I was persuaded to give Tocilizumab a try ( Ro-Actemra) the jury is still out, but you can just stop it, I understand. I felt quite well on Pred unaware of the silent damage that was being done, blood pressure etc.

[Chopin002 in reply to SheffieldJane]

Thanks for your response. I too am afraid of losing eyesight. I am thinking the higher dose pred eliminates that worry. I have cancer in my family and don’t want the increase risk of that. Maybe just me but I think I will take my chances without extra meds. I see your picture and amazed at how much you look like me, same hair, glasses. PMR shows more in the blonde, fair skinned women it seems. Best wishes . I read daily .

[SheffieldJane in reply to Chopin002]

Vikings - ask DorsetLady. I have Pred curls now.

I was on Pred for 4 years, most of that was plain sailing, down to 3 mgs ( PMR) then GCA was diagnosed. I thought more high dose Pred should be avoided if possible. I haven’t felt great on Tocilizumab though. It’s a breeze for some patients.

[PMRpro Ambassador]

It is something you really need to discuss in detail with your medical team. Your bone density is lowered - and the pred (they insist) will cause it to get lower and increase your risk of a fracture. That is why they are so keen you have the bisphosphonate - believe me, spinal fractures ARE painful!

I have never taken a bisphosphonate as my initial dexascan was very good - and for 7 years I took calcium and vit D religiously and walked for 1/2 an hour a day and there was very little change. I've just had another and showed the results to the local osteoporosis expert the other day - the spine reading has deteriorated and I really expected her to write the script for alendronic acid there and then but she expressed amazement at how good they are, couldn't believe I have been on pred for over 11 years and sent me on my way!

But just a warning - you cannot know the PMR has gone away because you are on such a high dose of pred still that PMR wouldn't get a look in. Nor can you know that in a few months you will be off pred and your bone density won't be much of a problem. TCZ will get you to a much lower dose of pred - if you are one of the lucky 50% you will be off pred altogether. There are a lot of aspects to consider. And you can't/shouldn't stay at high dose pred forever because there are a lot of potential pitfalls.

[Chopin002 in reply to PMRpro]

Not what I was hoping to hear. I too may be persuaded. There was a funny episode of Grace and Frankie last night. She said most old people just throw away the list of side effects and don’t even read them. Perhaps a sign. Like Sheffield Jane said at least you can quit . Do you think the one infusion of biphosphonate or the weekly tablet is better. The infusion is a year so if a bad reaction no getting away from it but I think it is in your system for years anyway. I did take it for the first 8 months on pred not knowing the effects.

[PMRpro Ambassador in reply to Chopin002]

I don't know really - I have never even had to consider either. If you have any problems with swallowing then AA isn't ideal and an injection or infusion needs to be considered.

[HeronNS in reply to Chopin002]

Your bone density is still not in the osteoporosis range. At best the DXA scan is only a guide. The numbers used are (ask anyone who has read up on it) ones which were decided during a meeting of the WHO because they seemed reasonable, not because there is any real science behind them. Think about it. For example, a large-boned Caucasian woman may indeed be expected to have a higher bone density than a small-boned individual from the sub-continent. For that reason the scale sometimes varies between countries, depending on the dominant body type. And within the human race generally there is such a wide variation of body types these T-score numbers can be no more than rough guesses at the actual strength of our bones.

That's why they look at more than the t-score. Other risk factors include age, previous "fragility" fracture - though how they know whether a fracture is a fragillity one or not beats me - and medication.

You can improve your bone density even while on pred. I did. I improved mine in one year from -2 to -1.6 without the use of any pharmaceuticals. At the time I wrote up my adventure and posted it here:

healthunlocked.com/pmrgcauk...

Have a read before you embark on any osteoporosis drug adventure. Best wishes! 🍀

[Chopin002 in reply to HeronNS]

Wow, your reply is so informative. That is the route I would like to take. Diet and excercise. Sometimes not the energy but push forward and hopefully improvement. Just the thought of those side effects make me sick. Thank you.

[HeronNS in reply to Chopin002]

I was so terrified of the drugs although my doctor was very keen for me to take alendronic acid (even more after she attended a workshop on osteoporosis) that I decided I'd take my chances with osteoporosis (probably foolish and naive). However, after my second DXA scan (yes, on same machine) she was quite impressed, asked me how I did it (I don't think I've ever had a chance to tell her how) and has never brought up the subject since.

[PMRpro Ambassador in reply to HeronNS]

Like my experience this week!! And I was expecting her to insist on AA - however, I've found another reason NOT to! It can cause atrial fibrillation - as if I didn't have enough trouble with that!!

[HeronNS in reply to PMRpro]

Well there you go! It pays to be a well-read patient.

[Mikb]

I was offered both methotrexate and actemra and refused both when I looked at possible side effects. I thought better the devil I know. I did have the yearly Prolia(?) shot until I got to a low dose and my Rheumy told me I didn’t have to have another. I was able to get off pred totally after 3 years. Its been 7 months now and so far so good.

[Chopin002 in reply to Mikb]

Good to know, thanks and good luck. I feel the same.

[PMRpro Ambassador in reply to Mikb]

You know you need to get your bone density checked to be sure you aren't experiencing rebound loss of density after stopping Prolia?

[Mikb in reply to PMRpro]

I get it checked once a year and only had one shot of prolia.

[PMRpro Ambassador in reply to Mikb]

Only 1? Was that because it improved so much after one? Interested to know.

[Mikb in reply to PMRpro]

I took alendronate for maybe 9 months then stopped. When he asked me if I was still taking it around the 2 year mark and I told him no, he prescribed the prolia. One shot only.

[PMRpro Ambassador in reply to Mikb]

How strange - never come across that before!

[Mikb in reply to PMRpro]

The shot is supposed to last a year I think. I do not have osteoporosis though I am in the osteopenia range.

[HeronNS in reply to Mikb]

A Prolia shot lasts six months. If you have two shots you must continue forever or risk the possibility of rebound fracture unless you take a different OP drug. There is some thought that having previously taken a bisphosphonate, as you did, may guard against that but I don't know if there's been proper research to confirm. Prolia is one of the drugs which can adversely affect your immune system.

[Mikb in reply to HeronNS]

So it’s good I only had one shot? Have not had a scan this year due to obvious reasons.

[HeronNS in reply to Mikb]

I think so. It's very odd you'd even have been prescribed it if you "only" have osteopenia. See warnings and precautions here:

accessdata.fda.gov/drugsatf...

[Mikb in reply to HeronNS]

That is weird. It was prescribed by my rheumy

[HeronNS in reply to Mikb]

Zoledronic acid is given once a year, called Reclast. It's a kind of bisphosphonate. Do you think that might have been what you received?

[Mikb in reply to HeronNS]

No. Pretty sure it was Prolia.

[HeronNS in reply to Mikb]

Interesting. Maybe it's a new protocol, to have someone on bisphosphonates for a certain length of time, then give them Prolia. As PMRpro's reply points out some people must start a drug like Prolia right away, and my personal opinion is that it is such a serious medication it should be reserved for those for whom there is no other reasonable option. Kind of like bringing out the heavy guns of modern antibiotics when the old ones can't or won't work. It's a balancing of risk and benefit.

[PMRpro Ambassador in reply to HeronNS]

OH is being sent straight to Prolia as he can't take AA because of swallowing problems - I suspect it depends on where you are. They don't appear to have a wide range of drugs approved here.

[alvertta]

Interesting. I start actemra on Monday. Lost part of my eye sight. Willing to try

[HeronNS in reply to alvertta]

So much depends on individual circumstances. I rail against the OP drugs,but if I'd sustained vertebral fractures I'd likely be the first person in line for something like teriparatide!

[alvertta in reply to HeronNS]

I am willing to try a new drug after prednisone let me down. We shall see.

[Darcy2000]

Seriously on Actemra only side effect was lightheadedness which lasted a few days and very manageable and that was on the first dose only

[alvertta in reply to Darcy2000]

Good to know

[HeronNS]

I bought one called hypervest. It's expensive but I don't ever expect to need to replace it! A main advantages is it fits close; there's a drawstring lace on either side so it can be adjusted easily, and it does come in several sizes in the first place. The other main advantage is the weights are small ingots so you can add as little as a couple of ounces at a time, or more if it works for you. It isn't the total weight you carry, but the challenge of increased weight.

It is not very fashionable but I tend to wear it mostly when I can wear something over it, i.e. not in hot weather, except indoors

There are others, this is the one I've had experience of.

hyperwear.com/blog/weighted....