Following 15 months of prednisolone for GCA I am now embarking on 15 months of prednisolone for PMR. Following the trip to the rheumatologist today the clinician is suggesting a course of bisphosphonates should be considered. During the blood tests the nurse explained one was to check if I had the enzyme that would make the treatment work?! The rheumatologist also mentioned possible jaw issues and stomach ones. The former made me GCA nervous and the latter just nervous!
After googling bisphosphonates my stress has increased further and I am looking for reassurances from those who are on or have trodden this path. Your experiences would be appreciated.................
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DevonMichael
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I have been on bisphosphonates for three years with no obvious problems. I was prescribed them because I was found to have osteoporosis when I had a dexa scan (having broken a wrist). There is a strong history of osteoporosis in my family and a few broken hips and it was with a heavy heart I started taking this drug. I would not have taken them just because I
Sorry I didn’t quite finish! I would not take bisphosphonates without having a dexa scan and would try to compensate for the pred through diet and exercise. Hope the above makes sense.
First of all: insist on a desascan. Which you should have had to provide a baseline when you started on pred for GCA. Once you know what your bone density is at present you can make an informed decision. If you currently have bone density that is in an acceptable range you can work on bone density with supplements, diet and exercise. HeronNS is our resident expert on that!
Thanks PMRpro I did get a bone scan for my GCA and was diagnosed as in the range of osteopenia and I have been taking calcium tablets twice a day since taking my first prednisolone tablet.
I took these about ten years ago for three weeks, they caused a major problem with my gut which is still with me to a much lesser degree. Maybe all my records start with don't mention bisphosphonates in big red letters. 😨 I have never been offered a dexascan. All good wishes.
Mmm I not the gut is one of the potential issues. The advice on fasting before tablet and taking in seated or standing position for 30 minutes sounds quite a ritual!
No great problem, I was on them for 4 years - similar reason to Arleneh ‘s. Only once a week, get up take tablet with plenty of water then sit down and check your emails, read the paper, do the crossword or have a shower. 30 mins soon pass. Just don’t lay down again!
I always took it Sundays, and despite my hubby calling it “my standdy uppy” tablet it isn’t really.
Thanks. I like the idea of Sunday and a planned activity makes it straightforward and the google search says 3-5 years treatment so nice to known you had 4 years trouble free!
You probably find 3 years enough, it stays in your system longer apparently. 5 years is the absolute maximum.
I know it doesn’t agree with lots, but as I say I had no problem, so hope it the same for you. I have a friend who’s on the monthly version (she had cancer) and she’s fine with it too!
Yes, you need the scan. You do know not to take your calcium at the same time as pred? They interfere with each other and should be taken several hours apart. You can improve bone density through nutrition, a few supplements (D3 and K2, sometimes a little magnesium) and appropriate exercise, and a study showed that this can be as effective as the bone meds, without any risk of side effects. I didn't follow the exact protocol of the study, not living in a lab, but nevertheless in a year I improved my t-score from -2 to -1.6 and they are no longer recommending any meds! More than half that year, btw, my pred dose was still over 5 mg.
I had TERRIBLE side effects from bisphosphonates and had to stop. My son bought me a fantastic book called Your Bones, by Lara Pizzorno. Definitely worth a read before you make your decision. Good luck
Im in the same position. GCA into PMR, ostepenia and osteoporosis, Ive taken bisphosphonates off and on but I'm now persuaded by recent research shown on BBC which indicates they reduce bone strength over time. I'm now taking Vit D, k2,magnesium, weight bearing exercise. Trouble Is, they'll only agree to a dexascan every 3 years.
DevonMichael. I take my tablet monthly. I wait an hour before Pred and food. I do, what I do every day, go onto the computer. Time flies. You have had good advice here from the wise ones.
I was prescribed bisphosphonates at diagnosis 17 years ago and only took two doses of Fosamax before having an extreme oesophagal reaction. Since then I've taken only AdCal as bone protection and have not had notable deterioration. I do have two-yearly dexascans though.
I was interested in reading your post and the replies, as I have just had my results from a dexa scan.
After 18 month on pred the dr. Suggested one.
Have they done a dexa scan on you,? Because no point in taking them if not required.
My hips are well within the limits, but my lower spine is outside the limits for osteoporosis, so dr has recommended AA once a week plus a calcium supplement also in exchange for my vit.d tablet.
Like you I am very concerned about side effects, it’s like the devil and the deep blue sea and I don’t swim well.
The replies on here are reassuring, and I guess we all react differently
Thanks Carole my deca scan was early into GCA to give aa baseline of where I was and I fell into the middle ranking of; the categories: normal, osteopenia, opeoporosis. I have found the responses reassuring and feel I must just bite the bullet.
My own experience of battling to get off all medication after 15 months of GCA and then to experience 3 months of PMR with no medication, followed by bouncing back to life again on prednisolone. Means I really appreciate the quality of life they bring albeit with drawbacks.
My point is you may not have had any change in density. In over 7 years of pred, a lot of it at above 10mg, my osteopenia readings of -1.0 and -1.3 barely changed. Loss of bone density is not inevitable when on pred. It pays to check first.
I was treated for GCA with prednisolone for 20 months and during this time I took one 70mg tablet of alendronic acid weekly. I used to take it on a Sunday morning and then sit and watch the news on TV. I didn't experience any problems with it. In hindsight, I wish I had asked for a Dexa scan. I was never offered one at the time.
I think we share a similar experience with GCA and PMR. After 20 months of prednisolone treatment for GCA I reached zero in July 2017. Like you, I then developed symptoms of PMR, but this has only recently been acknowledged by my GP. I am back on prednisolone -- day 13 of 14 at 15mg per day. Although I am disappointed that this has happened, I feel so much better now. I was beginning to feel quite desperate because I was in so much pain and had very restricted mobility.
Thanks Labradorite your Sunday morning ritual sounds the way to go as I watch BBC news 24 all the time!
Your GCA and PMR and prednisolone disappointment mirror exactly what happened to me! I use to struggle dressing - putting on socks was a challenge to stand on one leg. My wife now 'scolds' me for running down the stairs!
PS It is a pity that you had difficulty with your GP. The link of GCA and PMR is for all to see with a google search!
I was lucky in that I had a planned appointment with rheumatologist for GCA discharge. At that meeting I raised my mobility issues and PMR was diagnosed and blood tests were taken and the readings of ESR 57 and CRP 59 confirmed raised inflammation levels. The taking of 15mg of prednisolone brought immediate change and relief in a couple of days.
About two weeks after I reached zero I was discharged by my rheumatologist to GP care. At this time my inflammatory markers were not raised, and I was told by the rheumatologist that steroid deconditioning was the cause of my symptoms. My GP was obviously guided by the rheumatologist and did not accept that I had PMR until blood tests, taken at my request on my third GP visit in December, showed an ESR of 41 and a CRP of 27.6. Two earlier blood tests taken in August and October gave lower values. It is frustrating when attention is focused more on test results rather than the patient's account of symptoms (and in my case I had already experienced PMR symptoms with GCA). It seemed to me like a case of 'computer says no'. The GP is phoning me next week to find out how I've got on in the last two weeks. It was suggested that next I should take 12mg per day of prednisolone for 6 weeks. I'm not sure if I will get referred back to the rheumatologist. I have received some physiotherapy and hydrotherapy in the last three months, which has been of some benefit. But, since I've been taking prednisolone again I feel like a new woman!
Oh yes - PLEASE treat the patient and NOT the lab results!
And I do wish they would get this thing about "steroid deconditioning" out of their heads. It does happen in a very few patients. But it is VERY different from PMR and a patient who has had PMR is likely to be able to tell the difference. Their precious "deconditioning" doesn't involve the same stiffness that PMR does - it is weakness and even muscle wasting. PMR does not do either although patients do sometimes perceive their limitations to be weakness.
I am -2.7 dexascan. BEFORE the prednisone. it is in the Osteoporosis range. But I have said before and believe my bones can be thin and flexible. I haven't broken a bone. I take Calcium D and Magnesium and Vit K M7. I do balance exercises and weight bearing exercises and walk walk walk. I believe I am better off having thin bones than having bones made of who knows what? Everything I read about AA is becoming more and more negative and it always says don't be on it more than 3 years. I think I will wait until I am 85 in that case to possibly go on them. Also osteoporosis at my level means there is a 12% chance a bone will fracture in the next 10 years. Which, if you look at it from a positive stand there is a 88% chance it will NOT (thanks for the math help from my last post about this!) Good luck. Definitely see how your bones are NOW after the time on prednisone for GCA they may not have gotten worse and I would NEVER take AA in osteopenia!!!
I am currently ticking along on a very slow taper of 2mg and taking the associated daily calcium tablets and weekly alendronic acid for bone protection. I am on my third tapering run down to zero and hoping this time that when I reach zero my body can cope without prednisolone. I was originally diagnosed with GCA 4 years ago and have had two instances of PMR diagnosis. I hope you are coping okay I saw your post about unable to sleep, that happened to me when on high dose of 40mg I was up at 5am wide awake and gardening through the day like I was on Duracell batteries!
Glad to hear you are reducing the steroid dosage - I was diagnosed with GCA in April 2020 never having had any history of illness/never heard of the illness / put on shielding list due to C-19/totally devastated - work f/t and lucky enough to be able to do so from home.
Your original postings gave me a lot of hope the way you were reducing and I thought maybe this could /would also be my story. However, further reading made me realise this may be aspirational rather than reality and that it may be longer than 61 weeks before I can be drug free again i.e. to be able to come off the steroids. The info on this forum is really helpful and while upsetting at times, describes the reality of many people's lives who have either PMR or GCA or both. A life changing condition without a doubt - making me question lots of things. Do take care and wishing you the very best.
Well 4 months in I am afraid there is still a long road ahead! A tough draw that you should have to shield from Covid 19 and still be working and dealing with GCA. I too had no earlier medical issues and use to boast about my good health and virtually no sick absence during my working life. Then I hit 64 and had a combination of tenderness to my scalp and a jaw pain that had me living on soup for a week on what I thought was a dental issue. a combination of google and a keen and newly qualified GP revealed GCA symptoms and urgent blood tests and an immediate rheumatologist confirmed the worst.
As you say everything changes, my early months were filled with medical appointments, thankfully I was retired and now almost four years of repeat prescriptions, I am grateful for our NHS . Do watch out for side effects, my wife has reminded me of mood swings and being very grumpy, I would add increased appetite, putting on weight and increased blood sugar levels (pre-diabetic), all courtesy of prednisolone. However pred gives you life and as you say there is a lot of support from fellow sufferers!
I wish you every success and hope you get to taper to zero first time. I will post when I make the leap to nothing and what happens, I hope I can post success third time lucky to encourage those who follow me!
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