Inflammation still not contained

[PMRhealth]

The preds and MTX 10mg (with folic acid) were only working properly for the first week at the 20mg preds my GP initially put me on on 27 November. A week later, actually the morning that i saw Rheumatologist, i made the mistake of dropping too quickly and drastically down to 15mg, as i was feeling so irritable.

I also didn't curtail my activities at the time- doing as much as I could manage and crashing in between.

The advice here is that once the preds is sufficient, to ever so slowly taper down to the lowest level possible. And all this while not overdoing the exertion and maintaining whatever fitness, strength and flexibility I can in the meantime.

All this I have understood from hindsight of my inflammaton process not settling (still have neck pain and pain in shoulders and upper arms when i reach or pull things or just rotate shoulders too far).

So on 31 Jan, with GP's nod of approval, I increased preds to 15mg, and then on 7 Feb increased again to 17.5mg... as the 15mg wasn't sufficient even with the ongoing MTX, and trying to avoid returning to 20mg with a repeat of the irritability I experienced at that dosage.

The past few days have been quite tired and flared. Even before an oh-so-so gentle bob yesterday morning in the sea. And I didn't get cold...

I curtailed swimming last few weeks to try and limit inflammation. And was more consciously pacing and resting.

Aside from rheumatologist's diagnosis on 5 Dec, I have not gotten the advice I need from her to actually get on top of the disease process. She seems to be more interested in dropping preds dose, which she meant me to lower to 12,5mg on 5 Jan aleady, and recommended I do on 11 Jan, even though I was telling her inflammation wasn't settled.

When I emailed her last month regarding what I could do about getting on top of inflammation, she replied on 29 Jan inviting me to a SECUKINUMAB clinical trial - absolutely no comment on my concerns.

Due to see Rheumatologist again end March.

What am I missing to actually get on top of this inflammation? I don't think I should let this inflammation continue half- mopped for another 6 weeks before consult.

Please help

[PMRpro Ambassador]

This rheumy needs to get in the real world!!! It's all very well inviting you to a clinical trial - but usually there is only a 50/50 chance of being on the trial drug because they are randomised studies comparing at least 2 things - at simplest the new drug, not the new drug, The only real hope is that at least you get enough pred!

MTX can take up to 6 months to have enough effect to allow a reduction in the dose of pred. That is if it works for you at all - because while it can work brilliantly for a small cohort of PMR patients it does NOT work for everyone.

What are you missing? An adequate dose of pred to start with to get the symptoms well controlled first. Only then is it possible to reduce the dose of pred without the inflammation surging and causing worse symptoms again.

You say you hate the concept of chronic meds - but the reality with PMR is that you need the right dose of pred at any given time - otherwise you get a return of symptoms. YOu can't cheat with PMR - it has a nasty habit of winning the encounter!

Please could you complete your bio to at least indicate what country you are in? I assume the UK since you mention prednisolone rather than prednisone? But even which part of the UK makes a difference.

[PMRhealth in reply to PMRpro]

Thank you PMRpro for your considered response. Much appreciated!

My user info does state my country of residence as South Africa. I am in Cape Town.

We have prednisone, only 5mg tablets, according to my GP and our pharmacy.

[DorsetLady PMRGCAuk volunteer in reply to PMRhealth]

You can see your country of residence, but unless you untick the Hide box other members cannot see it..

.. and we regulars do know that those in SA have issue with getting low doses of Pred - which obviously make the tapering we often recommend very difficult for you.

But have to agree with PMRpro your GP is trying to rush you with an unrealistic tapering regime.

Maybe have a look at this for general info - and perhaps at the slower taper mentioned therein… that may help you taper more gently in the absence of 1mg tablets…

healthunlocked.com/pmrgcauk...

[PMRhealth in reply to DorsetLady]

Ah, thank you!I didn't realise it was hidden.

I am hoping for a better response from rheumatologist next time

[DorsetLady PMRGCAuk volunteer in reply to PMRhealth]

No that okay , it’s not the most user friendly forum....

Good luck with Rheumy..

[PMRhealth in reply to DorsetLady]

Thank you!

[KASHMIRI1]

Hi! I notice you mention Methotrexate and folic acid. Do you take then together? The advice I have been given is to take the folic acid 2 days after the meth. Also try not to worry about taking the pred as it will help your PMR. I had to take 60mg at the outset of GCA and it was interesting regarding side effects to say the least. You dont want the PMR to invite GCA to join the party.

[PMRhealth in reply to KASHMIRI1]

Thank you for your reply

I take folic acid everyday except on the MTX-weekly day

Yes, the GCA is what I fear with the neck and shoulder pains I've been having.

[Zebedee44]

Hi, I am wondering if PMR is not the only cause of your pain and stiffness, as you reported previously that you are finding swimming lengths to cause pain in your shoulders and neck. One way or another it seems you are challenging your body too much while addressing the inflammation that has built up.

In my own experience it took months to get an understanding of what was happening to my body after starting pred, and I kept a diary of symptoms. The higher dose at the start made me feel totally “wired” in body and brain, and carried on until I was below 10mg. The GP’s advice was misleading and led to a flare and a return to a higher dose, since which time it has been a long slow journey with many attempts to understand what helps and what hinders. GCA is always a worry at the start, and never really goes away.

It is such early days for you and you are younger than many PMR sufferers and impatient to get your active life back, as we all are. But this is something you have to learn to live with, sadly you cannot beat it into submission. You can continue to do all the things you love doing but with more respect for your body and your PMR. How lovely to be in a warm climate. Best wishes Chrissie

[PMRhealth in reply to Zebedee44]

Thank you Chrissie 😊

[Belfastman]

Hi- I have been taking 15mg methotrexate for just under a year combined with my pred . I was able to reduce my pred dosage to 5 mg, for several months but then had a flare in Jan. and then increased to 10. Slowly reducing and now at 7. I do have some intermittent pain in my temple which could be simmering GCA which I have in combination with PMR. In all honesty I’m not sure if the Methotrexate is making any difference.

[DorsetLady PMRGCAuk volunteer in reply to Belfastman]

Have you discussed the pain in your temple with your doctors … if not, then it needs to be.

[Belfastman in reply to DorsetLady]

I will be calling the specialist on Monday. I’ll keep you posted . Thank you for your concern. I always find this group so supportive.

[PMRhealth]

So on 31 Jan, with GP's nod of approval, I increased preds to 15mg, and then on 7 Feb increased again to 17.5mg... as the 15mg wasn't sufficient even with the ongoing MTX, and trying to avoid returning to 20mg...

An update from this is that I did ramp up pred dosage to the initial starting dosage of 20mg, also with GP approval, on 27 Feb.

This past week, the mopping of inflammation has been much more noticeable! I have even gotten away with some gardening and project activity, which may be unrealistic to continue at this level as Istart to taper. I am due to see Rheumy on 27 March.

How long is it advised that we be at this feeling of being "adequately mopped" before starting the slow and steady taper?

Oh, and I also began a type of HRT (Tibolone) 2 weeks ago

[DorsetLady PMRGCAuk volunteer in reply to PMRhealth]

As you have exceeded the time we recommend for dealing with a flare (14days), suggest you stay at current dose for 4weeks… and then you do need to taper in a slow and steady way.

And yes, moderate your activity- or you may end up in same situation.

[PMRhealth in reply to DorsetLady]

Thank you! Yes I exceeded the 14 days, as I was hearing that this was not a flare, but a process of trying to establish the correct starting dose

[DorsetLady PMRGCAuk volunteer in reply to PMRhealth]

Okay -well a new start then. So good luck

[PMRhealth in reply to DorsetLady]

Thank you 😊

[PMRpro Ambassador in reply to PMRhealth]

I agree with DL.