A quick SURVEY on COVID-19 and PMR/GCA/LVV Since... - PMRGCAuk


11,799 members21,537 posts

A quick SURVEY on COVID-19 and PMR/GCA/LVV Since the start of the COVID-19 pandemic have you experienced any of the following? Part 1

CandyHCandyHAdministrator456 Voters

Please select all that apply:

31 Replies

Not much to say life is just difficult.

Smokeygirl in reply to Nap1

And different!


Dear all,

A bit more explanation on the survey -

The Survey is designed to obtain information on how the COVID-19 situation has affected those with PMR/GCA/LVV.

The results will be used by a group of clinicians, including Dr Sarah Mackie, to help make decisions on delivering better clinical services for patients during the ongoing COVID-19 situation.

All results are and will remain anonymous.

with best wishes,


I am awaiting an appointment for Rheumatology in Manchester. Not seen a Rheumatologist since October 2019 ..self treating

There you go. Proof that medication treats the symptoms but does not salve the soul.

Living in Australia - and in Western Australia has meant we have now had several months with no community transmission here at all and no cases except very few strictly quarantined return travellers. This has meant except for borders closed to other States we have been living almost 'normally'. BUT despite this just knowing so much of the rest of the world has been having a terrible time with suffering and death at unbelievable levels - depression, anxiety and stress are still on the rise here as are mental health issues generally. Most people are also aware - as occurred in NZ - that Covid could 'easily' resurface at any time ....

I’ve said “No problems”, because I haven’t felt “anxiety” or “isolation” ... but I have felt more “wary” (about the risk of being infected and possible consequences), I have missed seeing family and friends, getting prescriptions has been a big more if a faff (but not “difficult”), and maybe I haven’t felt as comfortable about seeking medical advice as I would have done normally

I’m so scared I’m going to get this virus...

I believe the virus and other issues it has caused, has created a need for more pred to help with the pain and stiffness. I am up 1mg from March. I have been up and down but it appears 16mg is what makes me comfortable. This is up from 15mg. I was able to decrease for a little while since being on actemera but that decrease didn't last long.

There has been a lack of follow up to coming off the steroids which I did during lockdown ...

I have had continuing pain and so thought there was still inflammation .. and I still had PMR.

I have felt uneasy to visit the surgery but was able to request a blood test recently by phone and the results showed all was normal .

I was not expecting that,

So feeling a little lost and in the absence a doctors consultation I have been very appreciative of this site and its comments .

My next step I suppose is to make an appointment with my GP.

But I wonder how many others have felt unsure .


I just said to someone - I don't think that anyone has escaped unscathed. All I can complain about is that I need a bit more pred - otherwise I have no Covid-related things as listed but Covid meant I couldn't have the cleaner that would have made so much difference looking after a poorly husband after a fall - and his rehab was delayed because of Covid restrictions. Now he's had it there is a big improvement but the wait meant an even lower starting point.

I understand what you are looking for candy but I haven’t much to say I am 78 years old just found out I need a thyroid biopsy have incredible neck face and head pain and MRI shows nothing my tongue is crooked had a spinal tap and I have a femur that broke When I fell in September 2019 and has not healed because of the prednisone. So what has COVID-19 changed for me not much. Know what I mean?

Have felt and feel very much left to just get on with it. Had a period of five weeks with dreadful pain all day and all night at my wits end. So phoned my surgery and my doctor eventually phoned back saying a physio would phone me in the next couple of weeks. In the meantime I was prescribed higher powered painkillers.

Took them for three days but not much relief and ended up with horrendous constipation.! Phoned again and was prescribed even higher powered pain relief with packets of laxatives, which, when asked was told yes, more dreadful constipation! So I didn’t take them! Physio phoned and told me to do neck exercises and that I could get a TENS machine from the surgery. This didn’t help either. Think the pain was being caused by ? Something PMR pro tells us about that can be linked to having PMR and, of course I can’t remember the name of it! A tensing of muscle into a very tight knot.

Anyway, I have finally sorted it out in other ways, but really felt unsupported by my surgery, though I know they were doing their best in these times, communicating by phone.

The monotony of shielding since March cam be dispiriting and, in my case, often results in inertia. I'm aware I should make better use of this time. I was fortunate to receive very heipful advice from the 111 service over one weekend and I'm able to telephone my GP practice if the need arises. Niggling health issues have arisen over this period and common sense is required not to magnify them out of proportion.

I've just been feeling a bit low. Otherwise fine.

You've just got to get on with it! Fed up, but I guess so are most people.


Is this for the U.K? If so, I am in the U.S. and it is relevant for me.

HeronNS in reply to Noosat

Sounds like it's for anyone in this community with PMR/GCA/LVV

Noosat in reply to HeronNS

Two very different medical systems.

HeronNS in reply to Noosat

True, although the majority of questions could apply to anyone anywhere. Too late, I already entered, but none of the medical care options applied.... Besides, I benefit from universal medicare, like the Brits.


No complaints whatsoever regarding medical advice or getting my medication delivered -I live in Scotland and we are very well looked after. However, I have been missing contact with my family and friends as we are normally very close but because of this illness everyone is making sure they keep at a safe distance for my sake. Hopefully a vaccine will be found soon but meanwhile we need to stay positive and recognise how lucky we are compared to many, many others who have suffered the worst of this epidemic.

~Whilst living with PMR 5 + years has laid the foundations and ground work for what became my "new normal" it was the difficulty dealing with sudden uncertainty of losing our business and all associated issues impacting around that area ~

My feelings are not covered by the questions as my reactions are not so clear cut. There is a tension and an adaptation. There are frustrations and irritations but medical advice, delivery of prescriptions and telephone consultations with both GP and rheumatologist available. Yes, a little more anxiety about the steroids and what to do if I fell ill but plenty of relevant information on this Forum and online. My community was immensely supportive and modern technology enabled me to keep in touch with family and friends. Now it is a question of common sense precautions and carrying on with life as much as possible.

Missing family and friends but keeping in contact by skype , WhatsApp and video calls and usual phone calls, so not too bad. Shopping online, so not spending so much money. Positive side is no haircuts for 6months, or coffees o, so refurbished spare room with the money I have save!!! Actually, has been quite relaxing not to keep rushing about.

Stay safe everyone xx

The appointment system put in place by the surgery makes it very difficult for me to speak to my own doctor and can mean waiting around for 2 days waiting for her to call back! Is anyone else having this problem?

Just thought I would add that my answers are as they are because of Covid 19 and not because of my PMR.

I've tried to reduce my steroids quickly from 6.5 down to 4.5 over the Covid period - partly because of problems with my eyes (possible glaucoma and cataracts) but also because of the worry of getting Covid being on steroids. I had a lot of pain at first but I'm now down to 4.5 and adjusting OK. I had two telephone calls with doctors - one said I should try to get down to 3.5 pretty much as fast as possible. The other said go down very very slowly and prescribed Naproxen to help with the pain (which I haven't taken). I haven't seen the rheumatologist since Nov 2019 and haven't got an appointment.

I've been pretty much managing PMR without medical help (apart from medication of course) - just one appointment since diagnosis in May 2019.

I have now been on holiday abroad twice and it was great to be beyond my own four walls.

No Problems thank you