Another chance to add to Covid vaccine and rheuma... - PMRGCAuk

PMRGCAuk

13,372 members24,324 posts

Another chance to add to Covid vaccine and rheumatic disease knowledge: Take the Global Rheumatology Alliance COVID-19 Vax Survey

PMRpro
PMRproAmbassador

rheum-covid.org/vaccine-sur...

Open to anyone, anywhere!

75 Replies

Thank you and Dunded

DorsetLady
DorsetLadyPMRGCAuk volunteer

Done!

Was doing the survey but when it came to Which country I live in , neither UK nor England were listed on list of countries provided. I couldn’t even enter it manually. I was using my iPad. How strange...

PMRpro
PMRproAmbassador in reply to JGBH

How strange! Didnt even look for that, Italy appeared without a problem. It's funny here - the UK doesn't appear in German on our lists and it never occurs to officialdom to look for Regno Unito which is what it comes as! I, a non-Italian speaker, have to guide them round the list ...

JGBH
JGBH in reply to PMRpro

Indeed I looked several times... nearly typed in France out of despair... it’s a long survey too so shan’t bother to retake it. Wonder how others who did the survey from UK managed? Most odd that the UK is omitted from list of countries.

maria40
maria40 in reply to JGBH

It's under Great Britain.

JGBH
JGBH in reply to maria40

Thanks....

PMRpro
PMRproAmbassador in reply to JGBH

I didn't think it was too bad though definitely not their claimed 10 mins - except it wouldn't accept one of my sets of replies but didn't make it clear which I'd missed which was irritating. And I pointed out at the end they didn't offer the option for not stopping pred that it would be dangerous!!

JGBH
JGBH in reply to PMRpro

Yes I was surprised that scientists even suggested that steroids should be stopped like that. Also I wouldn’t stop my Tocilizumab because I have just started the treatment and I am still in agony... can barely function. Not convinced this survey is so useful for anything. Won’t bother to start again.

Greensleeves
Greensleeves in reply to JGBH

The survey is quite helpful, they ask if you have any concerns at the end . I think you’ve raised a good point.

phebamom
phebamom in reply to JGBH

I am also on Tociluzimab. Dr. did not suggest I stop it to get shots. Give it time to kick in. It took me two months to feel better, and it takes 6 months for full effect. hang in there.

JGBH
JGBH in reply to phebamom

Phebamon, thank you so so much for your words of encouragement! I did my 3rd injection on Monday.... so you give me hope again as frankly I have been losing hope... It’s a tough journey when one is losing one’s mobility so rapidly and having to cope with excruciating pain 24/7, while living alone so no support / help with so many tasks that have become hard or impossible to do! The idea of an helper to come for short periods of time, 3 times per day, when it suits them isn’t really thrilling... I’ll see... I try my best to cope but it’s disheartening. Still must carry on.So how long have you been on Tocilizumab? Were you in much pain and was your mobility restricted?

I am not able to get into my car as I used to do and go for a ride around the surrounding villages just for a change of scenery, so have been stuck at home since 23 December, apart from appointments at hospital and surgery, driven by volunteers and pushed in a wheelchair... thank goodness for those volunteers!

Do hope I will get some mobility back and my pain can be controlled. Thanks again for your encouraging message.

DadCue
DadCue in reply to JGBH

Don't lose hope! I took prednisone mostly in excess of 15 mg daily for over 12 years before Tocilizumab was offered for PMR. I felt a difference in 3 months and I was completely off prednisone in 7 months.

I have another autoimmune condition in addition to PMR. I did experience a relapse of the other condition and needed to go back to 60 mg of prednisone.

Tocilizumab was stopped temporarily in order to try a different biologic. I quickly reduced from 60 mg but got stuck on 15 mg again when PMR symptoms resurfaced. When Tocilizumab was restarted for the second time, I was off prednisone again in about 3 months.

I have now been able to stay off prednisone for more than a year.

JGBH
JGBH in reply to DadCue

Dadcue, many thanks for sending me a ray of hope. You certainly have had more of your share of debilitating health issues. My main problem is RA, uveitis, Sjogren’s, raynauds plus osteoporosis (fracture of pelvis) hypothyroidism (following thyroidectomy because of papillary adenocarcinoma), etc.

MRP hasn’t been diagnosed but it certainly feels like I have this, but consultant uses RA as a cause for all my problems.

So I have been on several biologics. To slow down thr progression of the RA. Etarnecept (enbrel) was the best. It gave me my life back and worked well for 14 years till I had very painful osteoarthritis in my knees and had total knee replacement in both knees. Then the biologic stopped working. It’s my 3rd injection of Tocilizumab. It’s been so tough, so painfully for so long it makes it difficult to believe I will get better. I so hope I still have a chance. So thank you for your encouragement. I wish you the very best.

DadCue
DadCue in reply to JGBH

You have had more than your share of difficulty too. I hope Tocilizumab works well for you.

Maybe you would know the answer. Tocilizumab works well for me so I'm not complaining ... no side effects that I'm aware of after 2 years.

I was taking Tocilizumab every two weeks and off prednisone when a severe flare of uveitis happened. I took Humira for slightly more than three months and it may have worked for uveitis but the pain and stiffness (PMR?) returned.

My ophthalmologist would rather that I be on Humira (Adalimumab) for uveitis. She has stated clearly that it is just a matter of time before another flare of uveitis happens. She says Tocilizumab isn't "optimal" for uveitis.

My rheumatologist gave me the choice --- Actemra or Humira but not both. When I choose Actemra, the recommendation was to increase to weekly injections indefinitely for as long as it works and hope that uveitis doesn't recur. There was some discussion about adding Azathioprine but I think that decision was deferred for if and when uveitis actually recurs.

Do you know of anything other than prednisone to treat uveitis? I would appreciate your thoughts.

In my case, PMR and long term prednisone got in the way of trying a biologic until Tocilizumab was tried.

curly55
curly55 in reply to JGBH

Hi, it's listed 'Great Britain' - I looked through several times before I found, I was looking for 'United Kingdom'.

Bcol
Bcol in reply to JGBH

It was Great Britain and had no problems.

JGBH
JGBH in reply to Bcol

Thanks. Don’t know how I missed it! Annoying but had been on iPad for too long and I suppose too tired to notice.

Bcol
Bcol in reply to JGBH

Took me 3 goes, first looked for UK, then England. Then the penny dropped.

JGBH
JGBH in reply to Bcol

You were more patient than me! Frankly felt too tired in the end. Well done you.

ChrisMcT
ChrisMcT in reply to JGBH

We were under Great Britain

Trewirgey
Trewirgey in reply to JGBH

It’s Great Britain

badgerbeck
badgerbeck in reply to JGBH

Look for Great Britain. This covers England, Scotland and Wales.

JGBH
JGBH in reply to badgerbeck

Yes but they should have use UK ... simple and more accurate.

thank you!!! I completed it. So happy they are doing this!!

Mission accomplished and grateful they are doing it!

Isn't the official name of the country "United Kingdom of Great Britain and Northern Ireland", and "Great Britain" is the name of the island which includes England, Scotland, Wales? I wonder how Northern Ireland and Eire appear?

You are absolutely correct.

PMRpro
PMRproAmbassador in reply to HeronNS

Quite - the usual! Surprised it didn't appear as England ...

HeronNS
HeronNS in reply to PMRpro

A bit like people calling the United States "America" - which the rest of the American countries (apparently there are 35!) object to.

PMRpro
PMRproAmbassador in reply to HeronNS

Not unreasonably ...

HeronNS
HeronNS in reply to PMRpro

I've just found a website which claims that the US has the largest land mass of any country in the Americas, and Brazil is second. They appear not to have noticed there is rather a large country to the north of the continental US. Trudeau the first was, I think, the person who said Canada was like a mouse living next door to an elephant.

PMRpro
PMRproAmbassador in reply to HeronNS

Particularly since Canada actually has a larger land mass than the USA...

HeronNS
HeronNS in reply to PMRpro

Went down that rabbit hole and discovered if you eliminate the WATER area, the US has more LAND. I guess we have too many lakes! However, other websites list the four largest countries as I always thought they were: Russia, Canada, USA, China. Never mind that probably the single most influential country on the planet since the time of the Romans must surely have been little England!

readingbooks
readingbooks in reply to PMRpro

Indeed ! If I hear or even read this, mildly irritated, I think to myself "Where exactly between the Arctic Circle and Tierra del Fuego are you thinking of going ?

DadCue
DadCue in reply to HeronNS

I never say America for the U.S. of A.

HeronNS
HeronNS in reply to DadCue

I don't think people in the Americas generally do. It's the Rest of the World!

DadCue
DadCue in reply to HeronNS

"Never mind that probably the single most influential country on the planet since the time of the Romans must surely have been little England!"

I also say that the majority of problems originated in little England when the the entire world blames the USA. Heck, if it wasn't for little England, there probably wouldn't be the USA.

HeronNS
HeronNS in reply to DadCue

Oh my father (European) said, only half seriously, that the US was to England what Rome had been to Greece.

Lately I've been coming to the idea that the Western world is still living in the civilization started in the Graeco-Roman world.

Interesting series on our CBC radio program Ideas (on Sirius radio in the US I think, or the internet worldwide) about the rise of the idea of the Common Good. It started with a program about the English Civil Wars and how that changed English society apparently for the better as ideas like universal suffrage (although back then it was only men) came to the fore. And the idea that anyone had the right to own property, i.e. not be stuck in a serf class.

HeronNS
HeronNS in reply to DadCue

True. We might all be speaking Spanish or Italian throughout the world.

DadCue
DadCue in reply to HeronNS

I'm glad we aren't speaking Spanish. Everything south of the US border speaks volumes about how we might have evolved as a country. I have often wondered how that happens. Does a border make that much of a difference?

St. Augustine, Florida is where Spain had a toe-hold on North America but Spain didn't get much further north. I'm counting my blessings.

HeronNS
HeronNS in reply to DadCue

Off the coast of Newfoundland are two islands, St Pierre & Miquelon, the last vestige of French colonies in North America, who have just asked if they can become part of the Atlantic Bubble (relatively covid-safe zone) if it forms again in a couple of weeks. This would mean anyone in the Atlantic provinces could theoretically make a trip to France this summer, albeit only a few miles away from Nfld!

Constance13
Constance13 in reply to DadCue

Ha ha!

DadCue
DadCue in reply to HeronNS

By the way, I just started reading The Tangle Tree.

I had to finish reading a James A. Michener book which takes awhile to get through. His books aren't exactly a fast read.

HeronNS
HeronNS in reply to DadCue

I read books by Jennifer Ackerman on birds after that. Coincidentally just read that studies show living in an area with a certain number of bird species is a greater contribution to individual human happiness and wellbeing than a pay raise! I wonder how many of our health problems are caused by being disconnected from the natural world.

Done ✅

Should we do this a second time if we already did it before being vaccinated? I feel like I did, it looks familiar.

It told me I'd already done it when I clicked on the link. I feel I've been filling in Covid questionnaires forever now so I've lost track of which I have and haven't done...!

I now feel it was a bit pointless to have filled it in before getting vaccinated. I didn't try to get in today because I am not vaccinated yet. Monday!

PMRpro
PMRproAmbassador in reply to HeronNS

They know you are registered, that is how you get subsequent surveys, but the questions were different - it is presumably to chart the changes as the impact of vaccines widens.

It is also a bit biased in some ways in that they ask about reactions in the first 2 months after first vaccination - I've had 2 shots but it isn't 2 months since the first.

JGBH
JGBH in reply to PMRpro

Which vaccine did you get? Any side effects?

PMRpro
PMRproAmbassador in reply to JGBH

Moderna. Sore arm the first time and feeling ropey on the 4th day, my husband was the same. Just a slightly sore arm this time and so far nothing else identifiable.

JGBH
JGBH in reply to PMRpro

It’s lucky you got moderne and that the side effects weren’t too bad. I am having my 1st jab on 15 April and am dreading it, it’s AstraZeneca! They really should have been honest about the possible serious problem even if it affects a small number of people. Would have preferred Pfizer or moderna but no choice here! Moderna has just been released here too.

PMRpro
PMRproAmbassador in reply to JGBH

Noticed that - but the AZ problem probably doesn't affect our age group as much as one link does appear to possibly be the contraceptive pill - which has a higher rate of the clots in itself. Most of Europe is now using the AZ for over 55s, after their initial reluctance because of lack of studies in older patients. When I had my first I was too old for the AZ vaccine here - and I have to confess I was a bit relieved. Not sure how it worked, the doctor just said at the end of the screening we were getting the Moderna vaccine.

Just heard an interview with the sister of a man who died - she is a pharmacist and she said she is still encouraging people to take the vaccine, even the AZ one.

theguardian.com/world/2021/...

JGBH
JGBH in reply to PMRpro

Thanks for your reply. In the UK they don’t really screen people’s health issues and there’s no choice. Am concerned because I had deep vein thrombosis many years ago and my health situation is pretty poor... but should I get Covid I am very unlikely to survive, so needs must and all that! Somehow Moderna gives me more confidence.

PMRpro
PMRproAmbassador in reply to JGBH

I think they do according to what others have told me - there is a questionnaire on the way in , just as I had to do, and it is up to you to tell them your history.

JGBH
JGBH in reply to PMRpro

Well no one has sent me a questionnaire. Who should do that? My surgery? They’re unlikely to do that unfortunately. But I’d like to know if possible.

Bcol
Bcol in reply to JGBH

You get the questionnaire on the way into getting the jab. And you can tell them your complete history.

JGBH
JGBH in reply to Bcol

Does this apply to the UK? I can’t imagine my surgery will take any notice of this. It’s not in their habit... So did you give the questionnaire/form to the nurse/doctor who did your jab? Isn’t too late then to decide which vaccine to have? I am due to have my jab on 15/4... I feel somewhat confused. Sorry.

PMRpro
PMRproAmbassador in reply to JGBH

You get the shot that was delivered for use on that day in that vaccination centre. There are protocols - this isn't the flu vaccine. If you are totally against having what you are offered then it is your right to refuse it and they will reschedule you. However - they are consistently saying the right vaccine for you is the one you are offered that gets into your arm first. It may change later, including boosters for certain people, but at present it is what it is with what is available. Under the circumstances I think they are all doing pretty well. None of us is entirely safe until the whole world is vaccinated - and THAT will take a few years, not months.

JGBH
JGBH in reply to PMRpro

Ok, thanks again. I worry too much... I find the whole thing stressful...

Bcol
Bcol in reply to JGBH

Hi, it all happens at the vaccine site. They will ask you questions and give you a form to complete. Mine wasn't at the surgery but a local sports centre. You get no choice on the vaccine, you get what they have unless you decide to say no. If you have a worry about your own medical conditions then talk to your doctor/nurse at your own surgery first. The decision is yours, I've had first dose, no. 2 in a few says and not feeling worried.

JGBH
JGBH in reply to Bcol

Thank you. Hope your second jab will be ok.

Bcol
Bcol in reply to JGBH

If you are really worried PM me and I'll talk you through the process. Peter

JGBH
JGBH in reply to Bcol

Thank you. Will do tomorrow.

PMRpro
PMRproAmbassador in reply to JGBH

As Bcol says - as you get it there. I could have downloaded mine but was handed one as I arrived and we went through it with the doctor as our histories are a tad complicated ...

JGBH
JGBH in reply to PMRpro

By what I understand, here in the UK, no one was handed a questionnaire/form, nor discuss at length one’s medical history. This hasn’t happened to anyone I know who has had the vaccine. I find this confusing...

PMRpro
PMRproAmbassador in reply to JGBH

Bcol is inthe UK, he did the same as me. But we are not the official sources of information - we are telling you what WE know.

Bcol
Bcol in reply to JGBH

I've just pm'd you my mobile no. If you want to contact me now

Done x

Done!! Thanks for sending. My big question is, how effective is the vaccine (I got 2x Pfizer) for people like us, immune-compromised? My Dr. says they have no answers yet and they are researching it. This survey seemed more about inquiring of rheumy people who had Covid, and what the effects were on them from the Covid. I believe we -as immune-compromised folk - still need to be more careful than others, even after being vaxxed.

PMRpro
PMRproAmbassador in reply to Neck680

They did ask about some medications.

Collecting that sort of data will take time and is difficult without testing everyone repeatedly - on the other hand, the progression of the figures over time will provide relevant information.

I am changing nothing about my behaviour just because I have had 2 Moderna shots - I am assuming that the work done in the UK with immunosuppressed cancer patients is relevant though. They found little response after 2-3 weeks to the first jab but there was a recovery in reponse 2 weeks after the second shot. This of course does call into question the wisdom of the 12 week gap for everyone but antibody response isn't the whole story with vaccines - the T-cell and B-cell responses are also significant and separate. It's like having life insurance for risky situation - I have no intention of trying my cover out there either!

done

Done

Thank you, especially for the info on and comparison to the cancer study. Interesting!