Hi,all, here I am again! I finally managed to come off the Prednisolone three weeks ago, but since then, I have experienced more and more pain whilst taking Cocodamol and .etodoloc and Amitryptiline for pain as I also have Osteoarthritis and Fibromyalgia.Recently I have been tested for blood in a routine urine test which appears to be inflammation in the bladder; scan to follow, swelling in one lower leg which is inflammation,and my tongue became very sore,which, when looked at by the dentist is not thrush but inflammation! It would seem that my body is full of inflammation and I don’t know what to do! I’m also waiting for an Opthamology appointment as I have a lesion behind one eye; this appointment has been cancelled 8 times so far, and I’m supposed to be seen this week; I won’t hold my breath. All this is on top of my wait for a spina procedure(private) for pain resulting in spinal stenosis!
I’m at the end of my tether, so much pain! Any advice would be welcome.🙏
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BPlady
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I see from last post 4 months ago, you were very concerned about osteoporosis, so I’m guessing that’s why you have reduced from 4.5mg to zero in such a short time., or maybe for upcoming procedure. Was that your choice or under medical advice?
Whatever, much too fast.
You really need to get sensible medical advice, and maybe even a very small dose of Pred may be enough to help your PMR and the associated inflammation. I appreciate you do have a lot of issues, but someone needs to be looking at you holistically….and sooner rather than later.
Thanks so much for your prompt response. I hope you are keeping well. It was my decision to come off steroids in that time because I suffered so many side effects, even on the lower doses. As we all know it’s almost impossible to see your GP nowadays, so I think I’m lucky if I get to see the nurse practitioner!Do you think it might help to take a small dose for a short time? If so, what dose would you recommend and for how long? You gave me really helpful advice before, thank you.xx
Hi, Dorset Lady, hope you are well? Just to let you know that following your advice I started taking 5 mg per day which I finished yesterday. The pain in my shoulders was much improved until yesterday when I woke in excruciating pain in my shoulders!! All I could do was rest up incapable of anything else; even brushing my teeth!This morning I woke to less pain but is still there,so have taken 2.5 mg today and intending to do this for this week as you suggested. Do you think this is ok?
Think it’s all you can do really, obviously 5mg wasn’t quite enough unfortunately-hopefully 7.5mg will be. Touch base with us after a few days - and have you spoken to doctor?
It must be so difficult to sort out where your various symptoms are coming from. I am so sorry for your horrible situation. I noted from my personal research that Fibromyalgia tended to cause bowel and bladder issues and that studies had shown that non steroidal anti inflammatory medication had some positive results with the pain.What were the side effects you experienced from Prednisalone? I wonder if we could suggest ways to mitigate them. It seems pretty plain to me that you have ended Pred too soon and you are probably flaring on top of all your other pain and discomfort. Two years is a very short time to be completely done with Pred in our conditions. It not only alleviates the symptoms but also offers protection against inflammation. It is worth persisting with on many fronts if you possibly can. Nothing else has the same profound pain and stiffness relieving effect.
When you have multiple conditions it is perhaps harder to experience this although Pred did ease my Osteoarthritis. You must feel that you are being attacked physically on all sides. I am afraid medicine is still not very good at dealing with conditions like ours. We tend to do our own research and feel pretty alone. That is the great value of a dynamic site like this. I have learned so much.
Have you tried D-Mannose for your bladder trouble? it is as effective as anything for bladder infections. I keep banging on about my optician who has every bit of fancy optical equipment going. I have regular eye health checks there. I was surprised at how superior the equipment was to the hospital Ophthalmology Department’s. It costs me £40.00. That might put your mind at rest.
I have had to buy a new bedside cabinet for all the supplements and drugs in the constant battle to feel better. I stopped Actemra / Tocilizumab because I felt that it was doing nothing for my PMR/GCA/LVV and was causing side effects. As my PMR symptoms returned with a horrible vengeance I realised just how much it must have been doing. We forget . It is a constant balancing act that we all share.
Thank you for your understanding reply; I always get good sensible help when I contact this hub which is just as well, as my GP told me nothing about PMR at the time! I hope you’re feeling much better along this road. Foolishly, I thought that 2 years would be enough to kill off whatever this evil illness is! Obviously I was very wrong
The bottom line is that if you have PMR and choose not to take pred, then you will have the pain of PMR as long as the underlying autoimmune disorder that causes the inflammation is active. Unless you are taking an antiinflammatory that is effective for the cause of the inflammation (in the case of PMR almost always pred) then the inflammation will build up - just as a dripping tap finally fills a bucket and overflows. And unmanaged inflammation in the body is also a problem - causing symptoms to some degree or other, potentially damaging the affected tissues and in the long term leading to the development of other conditions such as peripheral vascular disease and even cancer.
Thank you for your reply; I do understand what you’re saying too and it makes sense, so I’m going to try Dorset Lady’s advice and hopefully I’ll know soon enough if it’s working!
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