One thing after another 🤨

[Pamela60]

Lying in bed as I write.

Diagnosed GCA November 2015. Down to 3.5 mg and 4 mg this week. Three weeks ago started with pain right shoulder gradually worsening, this morning so bad both shoulders and neck crying with the pain. I’ve tried paracetamol, cocodamol. Ibuprofen gel, biofreeze. Nothing helps !

I can’t get an appt at my GP till May 11th but I did ring emergency line on Thursday and Gp advised ibuprofen gel 10%. Ummmm didn’t work !

I’m dreading being told to up my pred if it is PMR Ive done so well reducing. Sorry apart from the stroke in November. ( see previous posts) I feel so helpless in what to do.

I have my yearly review with the nurse on May 2 nd whereby all bloods will be done. If any changes hopefully the doctor will pick it up and contact me earlier.

I did try going back to 5mg with no change in pain.

Any advice please.

Pamela

[SheffieldJane]

That sounds dreadful Pamela60. It doesn’t seem feasible to suffer that level of pain until May 11. It sounds to me like the beginning of a PMR flare. I have learned on this forum that it is possible to temporarily increase your Pred dose and as long as you come down again within a fortnight, it doesn’t ruin a taper. Out of sheer desperation I would be tempted to do that. Maybe even 10 mgs. If this has no impact on the pain, then something else is going on. That level of pain constitutes an emergency to my mind and I would be tempted to camp out in A& E to get to the bottom of it. Good luck! I haven’t cried with pain since the very beginning of PMR.

[Pamela60 in reply to SheffieldJane]

Thanks for the reply.

I’ve never been diagnosed with PMR I thought I’d got off lightly.

All I think of is the horrible side effects of pred .

I’m ringing GP again in the morning I need this sorting.

[SheffieldJane in reply to Pamela60]

Pamela, the side effects do not compare to the pain you describe. The latest research has shown that at PMR doses,the really concerning side effects like osteoporosis do not show a significant difference,in incidence,when the age group is studied with Pred or without Pred. The main thing we have to watch out for is cataracts. I think that only showed up in the study because PMR patients have more eye checks.

Is there a particular side effect you dread? With me it was the vanity ones, moon face and weight gain.

A quote made me smile today.” Learn to dread one day at a time”.

Joking apart, we do have to live in the moment with this and your moment is full of pain.

[Pamela60 in reply to SheffieldJane]

Hi. Like you probably the vanity ones. Mind you I had a hard time with crying as I’m not a crier lol. I’ve lost all confidence of late , the GCA then stroke really knocked me for six.

Love the quote

[SheffieldJane in reply to Pamela60]

I am not surprised! Get yourself out of pain first, then stick with us for a while. We are all a bit flakey. 🙂

[Touting in reply to Pamela60]

The same thing happened to me I had a TIA I'm recovering but the fatigue is so hard. The fear a

[Constance13 in reply to SheffieldJane]

Love it! "learn to dread one day at a time"!👏😉

[Grants148]

So sorry that you are having so much pain Pamela,l do not think there is anything better than preds to ease the pain,l can understand you not wanting to have to increase your dose after tapering down,it is very frustrating ,unfortunately PMR can be so unpredictable,l hope your doctor can help you with this,5mgs of preds is probably not enough if it is a flare up.l hope things improve for you very soon and l wish you all the best xx.

[DorsetLady PMRGCAuk volunteer]

Hi Pamela,

Try a few days at 10mg, and see if that improves things. If you only stay at that level for say 4 or 5 days you can drop back down to 5mg easily enough.

You may not want to increase Pred, but if nothing else has worked then what other option do you have? No point in suffering!

Obviously if a few days of 10mg doesn’t make a difference, then you need to visit A&E, but hopefully that won’t be necessary.

[trish29]

Good Morning Pamela60, l really feel for you with your pain and your crying as what you are going through l have been through for the last few weeks and ended up in A/E and nobody should have to put up with that sort of pain .l apparantly had a Dislocated Right Shoulder which went back by itself caused by PMR, Osteoarthritis and muscle wasting in Both upper arms. l have used and taken the medications that you have described and got some relief plus l am still high on Prednisolone 15.05 and that's after nearly 14years ,also my lower spine has been effected since All this has been going on. I have also had gentle massage and ultrasound from my Osteopath and she does a strapping over the inflamed areas to help the inflammation and blood flow . The thought of other PMR/GCA sufferers going through this type of pain is unbearable. I know it's PMR connected because the pain becomes more bearable after taking the steroids but also some Myofascial pain syndrome mixed in and tomorrow l see my GP re my cataracts that have been diagnosed and my Rheumatologist suggested that l get my GP to ask for a referral for me because my headaches have got worse.Also l am hoping that maybe l can have some Blood tests done, not just for the PMR but maybe to check also for GCA and Fibromyalgia. I hope things improve for you as May 2nd is a long way off to put up with that sort of pain .Best wishes trish29

[Pamela60 in reply to trish29]

Thanks for reply. I never expected after working 30 years in the nhs to be on the other side of care. I feel blessed that this site cares x

[PMRpro Ambassador]

You sound to be developing PMR symptoms because you have reduced too far - PMR is also a symptom of GCA but often isn't seen at the beginning because the GCA is diagnosed and pred started at a dose way higher than needed for PMR.

It is a sign that the underlying autoimmune disorder that causes the inflammation is still active - and however well you have done in the past, you won't get below the lowest dose that manages the PMR symptoms. I know it is disappointing - but probably the reality and if it is still active - and you stop the pred then you COULD be back where you started. The doses needed for PMR are much lower and most of the side effects would be found at our ages in any population whether on pred or not, except for cataracts which are easily dealt with.

medpagetoday.com/rheumatolo...

[Pamela60 in reply to PMRpro]

Hi.

If I had no symptoms of PMR at 5 mg would I then expect no pain ? Even though I reduce at about 0.5 mg a month.

[PMRpro Ambassador in reply to Pamela60]

Sorry - don't understand what you mean.

[Pamela60 in reply to PMRpro]

Sorry - brain fuddled.

When I was taking 5mg of pred Daily i didn’t have these pains. So if I go back to that would I expect not to have pain?

[PMRpro Ambassador in reply to Pamela60]

Possibly - it depends.

[nickm001]

As others pointed out, PMR could be present while you were diagnosed with GCA. High dose needed for GCA will mask any PMR pain. Now that you are at lower dose, it showed up. When you have a flare, the best thing to do is react quickly and not allow inflammation to accumulate. Whatever dose you were before, rule of thumb is to add 5mg and see if it manages the pain. If not, I would go higher (10-12mg) until you can control the pain. If you dont stay too long at higher dose, you could drop back to 5 or so relatively quickly and then start tapper from that point. Whatever you decide, don't delay the action. If yo wait too long, you may have to go to much higher dose.

[Pamela60 in reply to nickm001]

Hi thanks for replying. I’ve gone up 5 mg today it seems to have eased a little if no better I’ll go up more.