Not sure if its really PMR

[Kma123]

Hi everyone, as per my previous post I've just been told that my symptoms suggest I have PMR. My GP has sought advice from Rheumatology and been advised to treat as PMR and see how my symptoms go. I started 20mg of Prednisolone per day on Tuesday and felt almost instant relief. I also have osteoarthritis in my knees and even they felt better. On Wednesday the pain and stiffness was the best it's been in a very long time and I thought it was a miracle. However on Thursday, Friday and this morning I'm in more pain than ever. My neck, shoulders and upper arms are awfully painful and stiff again and my knees are super painful again. I have also struggled with back pain for over 20 years and was told it was a worn disc at the time and my back pain has been worse than ever the last couple of days. Could it still be PMR and I'm just expecting too much too quickly? I've got to call the GP on Monday anyway as he's only precibed me enough Prednisolone to last until Monday so will see what he says.

[DorsetLady PMRGCAuk volunteer]

You may be expecting too much too soon - but because you felt better Tues/Weds were you more active than normal? Easy to do, and it then negates the work of the Pred.

Does the pain wear off during the day? Keep a note of symptoms/activity/when best/when worse etc so you can discuss with GP - he needs to know full picture.

As you are speaking to GP on Monday it might be worth trying ordinary painkillers today to see if they make any difference…

It may be that pain is not all PMR , or that you need longer at current dose, or perhaps slightly more - it’s a bit early to say exactly…..

[Kma123 in reply to DorsetLady]

Thank you. I think I'm just a little disappointed after the relief on Tuesday and Wednesday but did think I was probably expecting too much. I don't think I done anything different on Tuesday or Wednesday to overdo things. The pain has been easing very slightly but not until very late afternoon. I think it's more the fact that my back pain is so much worse than its been in a long time and obviously that isn't PMR but not sure why that's suddenly got so much worse.

[PMRpro Ambassador]

And what did you DO on those two good days? Did you fly round doing all the things you haven't been able to do?

You may be noticing the back pain more - I have a lot of myofascial pain syndrome within my PMR and that can be excruciating even if the PMR as such is well managed. The MPS is a longstanding problem for me as your problem is for you.

I think just a week is a bit optimistic - and you did get a lot of pain relief so I would want to see a longer trial. The other possibility is that the underlying disease activity could be associated with large vessel vasculitis or GCA and has ramped up a bit.

Given your age - I'm surprised the rheumy didn't want to see you and investigate themselves. We do get annoyed at the other version of "you can't have PMR under 50" but you are very young and it is just as possible it is something else with a polymyalgic presentation - especially with the longstanding back problem which makes me wonder about ankylosing spondylitis that wasn't detected years ago - have you had an MRI of your back?

[Kma123 in reply to PMRpro]

I don't think I done anything extra on those 2 days but maybe I did without realising. Before I started them I didn't think I'd see any improvement so quickly but when I did I was so thrilled which is why I think I'm now so disappointed. I was very surprised the rheumatologist didn't want to see me as well, I might try and push for that. I will see what the doctor says on Monday but he really didn't seem interested when I originally went in. I had an MRI on my back originally (think it was around 2004) and think I had another about 5 or 6 years ago with no significant change. I just feel like I am still quite young so to be in so much pain all the time does get me down.

[PMRpro Ambassador in reply to Kma123]

You are - without proper answers at least. One of the recommendeations from the BSR is that atypical cases should be seen by a specialist - and you certainly are at 42!

[Kma123 in reply to PMRpro]

I've in so much pain from my back for so many years and just accepted it, I think nowight be the time to push for better answers as my quality of life isn't what it should be at my age!

[PMRpro Ambassador in reply to Kma123]

Have you tried Bowen therapy? A good down-to-earth practitioner, not a woo-type with soft music and candles. Helped me a lot pre-pred. And Pilates.

[Kma123 in reply to PMRpro]

I've not heard of thar, will take a look

[Body_bonkers]

I had a similar experience - miraculous initial response but crashed on day 3 with worst pain ever which passed by that evening . I was not conscious of overdoing it but had slept solid 10 hours on my right side (something I had not done for months due to the pain) so put it down to that

[Kma123 in reply to Body_bonkers]

I hadn't even thought about that but now you've said it, I did have a couple of much stiller nights due to less pain (I normally toss and turn all night long) so it could well be that!

[ChoralG]

I think it sounds as though your symptoms are more likely to be osteoarthritis, as the prednisolone only gave relief for a couple of days. It’s best to chat to your GP to see if he can offer any pain relief that is more specific to osteoarthritis than to PMR. Sorry I can’t be more helpful.

[Kma123 in reply to ChoralG]

The doctor seems adamant my shoulder and neck symptoms aren't osteoarthritis and none of the pain medication they've given has really helped unfortunately. I'll see what they say when/if I get through to them tomorrow

[ChoralG]

Let’s hope you get more joy out of them tomorrow!

[ParoaPrimary]

Hello Kma123.Advice given by very knowledgable forum members is most valuable at this stage of your ' journey ' with this disease.I am just over 2yrs on my journey with PMR, starting at 15mg Pred. and now after the tapering at 1mg ,with minimal symptoms.I have had a few flares, upped the Pred. to 5mg which ' stabilised ' the situation.From the start i discovered that taking Pred. at approx. 10pm worked best for me and on waking felt ' ready to tango ' with no pain or stiffness which i previously had to endure when taking Pred. in the morning.I have tried to reduce inflammation causing foods, alcohol, cakes etc. and recently started taking apple cider vinegar (unfiltered )which i get from Aldi and is cheap.I noticed 2 favourable comments on the Earth Clinic website from members taking it.It is known to be a body ' ph adjuster 'and also has many other benefits as well.As we are ' wrestling ' with an inflammatory disease i think anything we can do to reduce inflammation must surely help. I have been lucky as i have worked (cleaner) for all of the period of my illness, except the initial 2 weeks of severe pain, and think light exercise is beneficial to help with blood flow and reduce stiffness, also muscle tone.I extend my best wishes and hope your situation stabilises so you can see improvement, as you taper.Thankyou for inviting my comments.We are all in this together and i hope you can take something from my thoughts.