Been a while since I posted, but a lot has been going on!
Was diagnosed with PMR 18 months ago, and am now at 9mg pred daily, having twice got down to 7mg. On both occasions I found that the stiffness/pain first thing in the morning was too much, especially at the top of my right arm, which is where it all started.
However, at the end of July, I was diagnosed with prostate cancer, and I am thinking that all the stress involved with the diagnostic procedures has not exactly helped the PMR!
Fortunately, the cancer is treatable with hormone and radio therapy, but my GP tells me that I really must go back on to Alendronic Acid, at least till I get down to 7.5 mg, as the hormone therapy can affect bone strength in the same way the prednisolone allegedly does.
Hopefully, I will be able to start tapering again soon, albeit slowly. The good news is that the cancer has not spread to my bones or lymph nodes, so the stress should reduce now.
Written by
Charlie1boy
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Sorry to hear your additional diagnosis but at least it is something that does respond well to treatment. Good luck with the therapy - I do hope the radiotherapy doesn't leave you too tired but then, you know all about that with PMR!
Glad for you that the cancer is treatable and has not spread. You are going through a worrying time and of course PMR will kick off just to help things along. Sounds like the double whammy of medicines affecting bone density makes a pretty good case for Alendronic Acid. I refused it because my bone scan showed an above average bone density for my age and I was a wimp about the side effects when I read them. Still my doctor painted a grim picture of me hobbling around 5 years hence. It's the devil and the deep blue sea for us. But don't put yourself through unnecessary pain at the moment. The inflammation is obviously active. Let us know how you get on.
A big "thank you" sheffieldjane. Yes "double whammy" we're the words used by my GP. I had taken myself off AA relatively early on, as my bones seemed to be fine. However, I have now accepted that it would be sensible to take them again for a while.
Your thoughts very much echo my own re the PMR, which I find an infuriatingly frustrating condition.
Charlie, I feel sure you're right about the stress surrounding the diagnosis and investigations of prostate cancer having an effect on your PMR. I know only too well from hubby's experience with prostate cancer how stressful it can be especially in the early days following diagnosis. However, it's good news that test have revealed the cancer to be contained within the prostate, so at least something to celebrate!.
Yes, the daily radiotherapy and hormone treatment can be tiring but it might reassure you to know that my hubby was still able to continue his part-time job around the treatment, driving himself back and fore to the hospital for some distance throughout, although in fairness he didn't have to cope with PMR as well.
If your bone density is fine now after 18 months on steroids for PMR, then hopefully all will remain well, but always ask for a DEXA scan if in doubt. If you do have to take Alendronic Acid, then hopefully it will just be for a very short time. The Vitamin D that you are probably already taking will help enormously too.
If you haven't already found it, there's a good prostate cancer forum on HealthUnlocked as well.
Sorry to hear your additional bad news, but I know many who have had a successful outcome, so fingers crossed.
As you rightly say, it hasn't helped the PMR, but you need to concentrate on the cancer for now, and don't even think about reducing until you are over everything else, PMR has to take a back seat for a while. Good luck.
Wow! What friends on this forum! Seems you support my decision to go back up to 9mg; that certainly helped with the pain and stiffness , and I don't feel ready to reduce just yet. I think the result from the bone scan, which I got on Friday should help to reduce the stress now.
I am really optimistic for the future, even more so after reading what people have said on this site.
Absolutely agree to go back up to 9mg. You, and your body, are going to need all the help you can get as you go through treatment. Please let us know how you go along.
I know this forum is obviously primarily for dealing with PMR GCA, but I think we all think of each other as friends (in the original sense, and not just social media speak) so we are interested in other people generally.
Hey Charlie, what a bummer! As you say, very treatable. I take AA myself after being diagnosed with low bone density (not caused by taken steroids, just coincidently diagnosed after DEXA scan). Could do without it of course! Good luck with the treatment.........
Remember you starting PMR about the same time as me and was on the receiving end of encouraging comments from yourself. So sorry to hear about additional health problems but this cancer does seem to have very good recovery results ( know 3 people at the moment who have received treatment successfully) so will be thinking of you as you go through this extra hoop!!
Think you've done so well with PMR and as others have said put this on the back burner for a time. Wishing you all the very best and again as others have said this group is so encouraging and caring - we shall be looking forward to hearing positive news from you in the not too distant future. Keep in touch!
That's really kind of you Jackoh. It just serve to show how right DorsetLady was when she said that we are all concerned for each other on this site. Friends, even though we have not met each other (mostly).
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