Much Better

Despite no inflammatory markers my GP believed I did indeed have PMR. I have never felt so well after 3 weeks on 15 mgs of prednisone. I'm beginning my tapering. My situation is a bit complicated as I have both MS and CMT so I thought my problems might have been neurological. I didn't know I felt so bad until I started prednisone. Thanks for all the comments I received.

[DorsetLady PMRGCAuk volunteer]

Good luck, but don’t be in too much of a rush to reduce - and maybe have a look at this now you have a diagnosis -

healthunlocked.com/pmrgcauk...

[Hidden]

Thank you. I shall read this information.

[PMRpro Ambassador]

Good - it is amazing when you realise how bad you felt isn't it! Now, patience - don't be rushed into reducing too fast.

There is someone else on the forum with an MS diagnosis - name escapes me.

[YummyBear]

You were so lucky that your GP saw that you needed Pred. I am pleased this has been effective for you. I say this as I suffered so much for 6 months from July to December 2023 with painful symptoms for which the CRP+ESR markers were off the scale and all my GP did was ask me to have repeat bloods. I had all the PMR symptoms except hip pain and although I asked for a short course of Prednisolone, he said 'no'. All I did was to rest and sleep endlessly plus take paracetamol.

[Hidden in reply to YummyBear]

I am sorry that you didn't get the help you needed. I hope that you find what you need.

[AtopicGuy]

CMT (Charot-Marie-Tooth, aka hereditary motor and sensory neuropathy) is an inherited genetic disease. In some cases, it causes the peripheral nerves to degrade in very similar way (demyelination) that MS (multiple sclerosis) affects the central nervous system. Interestingly, a link between genetic CMT and autoimmune MS has been established in the last 20 years (see paper below).

jnnp.bmj.com/content/90/2/187

CMT also causes muscle weakness and pain, so it is interesting that you have now been diagnosed with PMR, another autoimmune disease, despite your inflammatory markers being normal. Hopefully, prednisolone will help with the symptoms of both MS and PMR.

[Hidden]

That is an interesting article. I have CMT 2 which is an axonal form of the disease unlike CMT 1 which involves myelin disrepair.