Prednisone and “protectants”
Posted , 10 users are following.
So I FINALLY got to see my gp today re my PMR He had me on multiple blood tests so, 4 weeks ago in 8-9/10 classic bilateral pain, i went to a walk-in clinic and was given a prescription for 20 mg/day prednisone.
Today my doc said that out of concern for bone loss and since I'm quite athletic, i should be on Fosamax 70 mg/week.
He also said to protect my stomach he wants me on a proton pump inhibitor called Pantoprazole Magnesium, also called Tecla,
this one because my reticulocytes show about 10% higher than the high end of normal.
Any thoughts/experience/warnings here on these drugs?
I won't be able to see a rheumy for 4 weeks for a second opinion
I am feeling no side effects from 30 mg prednisone/day for since I upped from 20-30 mg
0 likes, 18 replies
Michdonn jack1949
Posted
Hi Jack, I am not a ski instructor and cyclist after being on Prednisone for 2 years and one density drip my last bone density scan showed that my bones are more dense. My highest Prednisone dosage was 30mg for six weeks. Get tested, taper slowly, stay active , positive and smile. 🙂
jack1949 Michdonn
Posted
Thanks Michdonn. I'm curious now to check my current bone density so I will, if the cost isn't too high. If I'm on prednisone for a while, it would give me a comparison point.
BTW, I'm a very keen road cyclist/former national team and I'm so happy I can even ride when I'm flare-ish even when walking is difficult.
A keen skier too, alpine & xc, but PMR ended my season early.
Cheers!
Michdonn jack1949
Posted
You are welcome Jack, my bone density scan were covered by insurance. I also believe my bone density was helped by a lot of walking. It is difficult at first by worth the effort. Keep moving is the key. 🙂
EileenH jack1949
Posted
I took 4 Fosomax tablets before deciding to wait until I had had a dexascan done to see if I needed it: I didn't at the time and took no more, in over 7 years on pred, mostly at above 10mg/day my bone density has barely changed and was still firmly in the "no treatment required" range. Loss of bone density is NOT inevitable but you do need to know your current status. Especially if you have been athletic - demand a dexascan, new mantra: No dexascan, no bisphosphonates!! Though it does occasionally result in surprises.
Using a PPI longterm will contribute to bone density loss. By no means everyone requires one when on pred, I have never taken one and many people on the forums do well with just yoghurt or taking their pred in the middle of a meal. An alternative with fewer/different adverse effects is ranitidine, sold as Zantac. Taking a PPI longterm makes it less easy to stop taking them as stopping them suddenly results in rebound acid production - ranitidine in easier to get off.
EileenH
Posted
Ooops - PS: you DO need your calcium and vit D levels checked and supplements of both anyway.
bob03667 jack1949
Posted
Knock on wood, but having been on Prednisone for about 6 months, I haven't had any side effects - at least none that I am aware of. Now I was only on 20 mg for about a month and then dropped to 15mg 10 in the morning and 5 at night. I've been on 10 mg for about 2 months. I was never on as high as 30 mg so I couldn't say.
Since I haven't had the slightest indigestion the entire time, and I eat a diet mostly of fish, broiled chicken and veggies - lots of salads, my weight has stayed the same, and so I haven't taken any meds to head off stomach problems.
nick67069 jack1949
Posted
stick with prednisone which you need for PMR. As far as Fosamax, because you are quite athletic, you probably dont need it and I would certainly request bone density scan ( dexascan) to have a baseline for later.
For stomach protection yogurt is what most of us use. In the begining rheumi put me on proton pump inhibitor and antibiotic and they made me sick, so I would not take them and would take something natural instead - like yogurt.
I would be a bit concern why you need 30mg of prednisone ; usual starting dose is 12.5 - 25mg for PMR . Hopefully you will taper lower soon.
Finally, be careful with exercise - take it easy and keep it in "recovery" mode intensity. PMR inflames blood vessel and restricts blood supply to the muscles. If you over do it, it can actually damage muscles since prednisone changes/inhibits muscle recovery (rebuilding).
Anhaga jack1949
Posted
First rule of bone care: DXA scan before agreeing to any medications. If you are like most of us you will not really need any medication. Bone density can be preserved and even improved by the right diet, a few supplements (consider adding Vitamin K2 to your calcium and D) and appropriate exercise. With PMR it's not really wise to do a lot of things which stress muscles a lot. But weight bearing like walking, including wearing a good quality weighted vest if you like, tai chi, some people say Zumba, is perfectly acceptable. And if you are in good shape from being athletic anyway you will be able to do more than others who came down with PMR but for whatever reason (perhaps even inability to exercise for some time before treatment) are not in very good physical condition. I was able to do everything I had before PMR because, thinking I just had osteoarthritis, I'd continued exercising all the time - it was losing the ability to exercise which drove me to a new doctor and finally a correct diagnosis. As time has gone by I have become weaker, but I've also moved from mid 60s into my 70s so that could have a lot to do with that!
Google healthunlocked my osteoporosis journey for my account.
bob03667 Anhaga
Posted
Thanks for the DXA advice. I have some mild osteoarthitis in my right hip so I did have a very recent xray and he said the bone density is just fine. How often do you think the DXA should be done - once a year??
I am very active and do 3-4 mile fast walks 1-2 times a week, play golf 2-3 times a week, exercise 30 minutes every day and do them in a hot tub which I'd recommend to anyone - a lot of gardening and landscape work, etc. I agree that exercise is one of the real keys. I guess the saying is correct: "Snooze, you lose".
EileenH bob03667
Posted
You cannot tell bone density from a plain x-ray until the density is so low the bone would be crumbling, it must be a dexascan.
Anhaga bob03667
Posted
Usually a DXA scan is done less often as bone density changes slowly. Where I live I received one a few months after starting pred, then another a year later, with a recommendation for a third three to five years later. Haven't had the third one yet. there was a good change in my density reading between the first two - from my non-drug regimen! And, as Eileen says, the x-ray won't show anything, However a few years ago, when I was being investigated for why I had so much pain, among other things my spine was x-rayed and the report included note that there was no evidence of fracture, so I guess there are some things they can see. But they can't determine density.
ptolemy bob03667
Posted
I was told that I could only have a Dexascan every three years on the NHS in my area.
jack1949
Posted
Thank you ALL for your timely and helpful comments and suggestions!!
After reading yuur comments and diving into some of the research re Fosamax, and the ppi inhibitor, I am NOT going to jump into those meds.
Very helpful was the info re DEXA, Curiously, I forgot that I had one done a few years ago to check my body comp numbers re muscle/fat. This was for sport purposes and I ignored the bone density number. So I guess I have a baseline pre-prednisone BMD!
I'm going to book a new scan asap and look closely at the bone number!
BTW, this am, after about one month of dealing with PMR, I woke up with NO TRACE of shoulder/hip pain or stiffness! Nada!
So I can only assume that 30 mg was the magic number for me
I'm wondering if I can shift down to 25 or 20 with my split dosing sched...
Michdonn jack1949
Posted
Jack, we all have slightly different ideas but I would stay on 30 mg until I stabilized and had no more PMR pain . Did you have to increase do to a flare? Or are you trying to find the level to stabilize PMR pain free. That would make a difference in the taper.
Good luck. 🙂
jack1949
Posted
It seems it took 30 mg to reach a consistant pain free 24 hour day., not just to knock back a flare. My only concern is that I read that 30 is on the high side of dose amount, so I'd like to drop doen to 25 and platesu there if possible before starting to taper. And I'm led to believe that tapering is best done under the care of a rheumy. Which for me means May 15
Anhaga jack1949
Posted
Tapering "may" be best done under the care of a rheumatologist, but many of us are treated by our GP only, and many patients have to instruct their doctors, whoever they are, on how tapering is best managed - a GP often more amenable than a specialist.
Michdonn jack1949
Posted
Jack, you maybe correct, but my Rheumy rushed me right into a terrible flare, since then with the help of the forum I have managed my own tapering . I use the DSNS method with some modifications and will continue to do so. My Rheumy would not even discuss the method with me. So now she provided me with prescriptions. Good luck on the rest of your PMR journey, but remember you know how your body feels, listen to your body. 🙂
EileenH jack1949
Posted
In my experience rheumies are no better at supervising tapering than anyone else - and often they are too enthusiastic in their desperation to get patients off pred. Try 25mg and see how it goes - or 2x 2.5mg drops.