3 months of major stress and a flare-need advice on tapering again

[Mstiles]

Like many here I’ve very difficult experiences with rheumies.

I was diagnosed in Jan 18 with PMR/GCA and put on 40 mg of pred. Some of you may remember my first rheumatologist fired me from his practice because I didn’t follow his reduction orders and the second one verbally abused me and told me I was killing myself with pred, I finally was able to get an appointment with a new one in April of this year. I had managed to reduce to 10 mg by then. I showed her the slow taper plan that I planned to use going forward, and she listened, said I was doing well and to continue doing what I was doing.

Soon after that a lot of stuff happened! My car died and I was without it for three months, my son who I live with had a gout attack that made him miss work and didn’t get better with the usual meds, it lasted for months. We are very low income and him missing work was a major stress.

Then by a miracle we were offered an apartment in a government low-income senior apartment with affordable rent, which was good news!!, But it involved massive paperwork, documentation, medical qualification from doctors, interviews, appointments, etc. then all the packing, hiring movers, etc. we moved 3 weeks ago.

Meanwhile soon after I saw the new rheumatologist in April I had started having problems with the reduction to 9mg. Lot of hip, knee, muscle pain etc. I saw the new rheumatologist again beginning of June and spilled out all my stresses to her, she listened and didn’t blame all my symptoms on the pred which was a new experience for me! I had CRP and Sed rate tested both of which were up, so she told me to try raising my pred 1-3 mg. I went to 12 which really helped the pain, the blood markers went down also.

The next week the movers came and we moved with our two cats, not easy!

We moved on a Saturday and by the next day I could barely walk. Worst pain in my hips and knees ever. Couldn’t sleep, pain all over. I added another 1 mg, and I’ve been on 13 mg post move for three 1/2 weeks now. The pain is almost all gone except for my right hip which hurts if I bear weight on it on getting up or down, like getting out of the bathtub. Could this just be arthritis or bursitis? We are still somewhat unsettled in the new place, some things need repair, but the affordable rent is a gift to us and to my sister who was helping us financially and wanted to retire but we were keeping her from it. Major stress.

So I’m looking for advice on beginning to taper again to get back to where I was 4 months ago at 10.

I’ve been dealing with a lot of anxiety since the move, I can’t relax!, and I’ve also lost about 7 lbs since April.

I want to keep on good terms with my rheumy after my previous disasters, so I thought I should contact her about where I am now and get the bloods done again to see if they are raised or if it’s OK to reduce now.

Please excuse this rambling post! I Any advice or your thoughts are gratefully appreciated!

[Hidden]

Hi mstiles...what a stressful time you are hopefully coming to the end of. The hip could well be bursitis but if it eases with pred then could be part of that..have you tried it painkillers. I would be letting the PMR settle totally before I reduced. I might even go up again to make sure it's all under control fully. Stay 4 to 6 weeks if you can the you can do a slow taper..

[SheffieldJane in reply to Hidden]

Morning! It ain’t half hot! X

[Hidden in reply to SheffieldJane]

Too hot for me and my dog....

[HeronNS]

Sounds like the hip problem is not really part of PMR, although the extra pain won't be helping the PMR. I don't know if you have any way of getting some physiotherapy? If not, then your doctor should still be able to give you some guidance about some exercises or some techniques to ease what may be very stressed and tight muscles causing referred pain. In the meantime, try what Poopadoop suggests, a little ordinary painkiller, just to see if it will help, although don't take them at the same time of day as you take your pred. And I used to find a hot water bottle really relaxed the muscles, although one hesitates to suggest such a thing while the whole planet is in the midst of a heatwave!

[SheffieldJane]

Your post is perfectly clear. Although it is nice to hear about you, I am sorry that it has been such a stressful time and understandably you feel unwell. I would wait until your symptoms really settle, then begin a slow journey down, using dsns or similar by 0.5 every 3-4 weeks. You need to get your hip investigated to see if it is bursitis or arthritis and take advice on treatment. Are there any mindful classes near you. You also need something to lower your anxiety levels. You’ve come through the really hard part and need to be equal to the good part, now you are out of the woods.. Try not to be too hard on yourself about your sister’s help. It can be a real gift to help a loved one. I hope your son is feeling better with the painful gout. Let us know how things are for you. 🌷🌈

[CT-5012]

I don’t have anything to add to the above, just to wish you well very soon. You have a lovely sister. 💐

[DorsetLady PMRGCAuk volunteer]

Nothing much to add, very stressful time recently, so don’t even consider tapering until you feel a lot better! Which will mean some rest - or at least as much as you can given that you’ve just moved!

When you do, would suggest 1mg a month, and slowly - think you have copy of my taper.

Good luck.

[Jackoh]

What a stressful time you’ve had but you’re near the end of it all now. Congratulations on how well you’ve done so far. Agree with everyone else re slow tapering and waiting until you feel ready. Keeping your Rheumatologist in the loop I think would help as long as you’re concise. All the very best. Let us know how you get on.

[Blearyeyed]

Agree with everyone else's suggestions , don't taper until you get settled and have got the hip pain and stress under control as if the issue isn't PMR Flaring at the moment if you try to push it it could end up going that way.

Try the other pain killers , rest , relaxation , some heat pads or ice pack ( which ever gives you better relief on the hip pain ) and then as it improves some gentle exercise , but very gentle at first , if it is bursitis too much , too quickly triggers it again.

Talk to the GP or Rheumy about what you are doing , especially if you feel that you may not be at the dose they expected by you next visit.

If you explain clearly what has been happening and what you are doing , ask for additional advice for lifestyle or other techniques to help you get on track , and then show your hope that they will understand were you are , you get their approval , this helps to stop the worry of what they will say or think later playing on your mind and giving you extra stress.

If it ends up being a flare then don't beat yourself if you need an increase for a short time either , these things can happen to us all.

Take care xx

[PMRpro Ambassador]

I think you are right to go back to the rheumy - but in the meantime wait a bit where you are because you aren't 100% and you need to be as good as you can be before setting off on the taper road again. You also need to get that hip at least x-rayed to rule out other possible reasons for the pain.