Inclusion Body Myositis

[Calbost]

I was diagnosed approx 20 yrs ago aged 40. My condition has progressed to the point that I can no Ionger walk and my arms are getting weaker. I am bed ridden for 95% of the time mainly due to chronic pain in my lower back area. This prevents me from staying in a seated position for less than 1 hour. Do any others suffer this kind of chronic pain? My neurologist isn't helpful with my pain issue.

[JohnofWsM]

Hi, I have had IBM for over 6 years. I also had severe hip, sciatic and right shoulder pain. the consultant neurologist put me on Naproxen 3 x 250 mg a day with 1 omeprazole morning and one at night for stomach protection. I said surely I can't stay on these full time and she said it is no problem if you have annual blood tests to keep an eye on kidney and liver function. They take a while to build up their effectiveness so don't expect miracles in the first week or two. I have proved to myself that they work as I tried to be clever and come off them only for the pain to rear up again. I have managed to reduce them down to 2 tablets a day now, one morning and one evening. Definately worth trying. Let the forum know how you get on as we all need help from each other.

[Calbost in reply to JohnofWsM]

Hi, thanks for your info. I will be contacting my GP regarding the Naproxen.

Pain management in my area ( N.E.Lincs) first looked at my issues in 2018. Initial plan was for an Epidural but the consultant said no, he wanted to burn the nerves in my lower back. He claimed it could last as long as 18mths. Months prior, he first injected the area with cortisone/botox (not sure which exactly) this helped a lot, but only lasted a few months. His nerve burning procedure followed months later, it failed completely.

I have persued this problem with my GP & Neurologist ever since without and success. Loads of pain killers tested. The last few include Etoricoxib, Pregabalin and Duloxetine, all failed to help.

I will suggest the Naproxen to my GP. The only issue could be that I need to have it in liquid form as my condition has also effected my ability to swallow so now have a peg feeding tube.

I will update my progress.

Many thanks.

[Calbost in reply to JohnofWsM]

Update: I've gradually increased my Naproxen dose, it's now at 750mg/day with a slight improvement. Only today I was speaking to a GP about taking it to 1000mg/day (max I believe). The strange thing was, the GP ( different to the one that initially prescribed Naproxen) claimed I only needed to take a dose as and when I needed pain relief, although I'm in permanent pain. I read that you are on 500mg/day permanently. Have you been told anything similar?

Thanks in advance.

[JohnofWsM]

Hi, I am actually prescribed 750 mg per day (250 mg 3 x daily) but have found that 500 mg per day, one morning with breakfast and one before I go to bed is sufficient. Taken with 20mg Omeprazole morning and evening. Omprazole was doubled from one dose daily of 20 mg because I was getting sore throats. Neurology consultant at Bristol Soumead said to stay on the Naproxen permantly if it is stopping the pain so long as I take the Omeprazole. I tried cutting it out but the pain returned. I don't sem to have any side effects. I have definately concluded through experimentation that a single dose when you get pain is not that effective.

[Calbost in reply to JohnofWsM]

Ok. Thanks for your info. I will stick with the daily dose, which is my preferred method. I have taken Lansaprazole with my medication for many years, which is similar to Omeprazole.

Thanks again.

[Calbost in reply to JohnofWsM]

Hi again. Just an update regarding Naproxen. Unfortunately it's not worked for me, even at 1000mg/d. It's now back to the GP and Neurologist, which will take time as he's left and no replacement yet. Yet more delays while the suffering continues. That's life of now.

Thanks for your guidance by the way.