Dear fellow vascies, can I ask you to complete this very short survey?
I know that PMR causes fatigue as well, but please only do the survey if you are diagnosed with GCA.
The aim of this project is to explore and discover how individuals with vasculitis, manage with fatigue in everyday life in the UK.
The link for the survey is: essex.eu.qualtrics.com/jfe/...
Which is fair enough - except PMR is part of the spectrum of vasculitis, just at the other end from GCA. and many PMR patients have large vessel involvement that may not be investigated for.
I think it has to do with parameters of the research project. They are looking for patients with a diagnosis of vasculitis.
So not sure now if I should do it or not!!!
Can I help? If you have GCA you can, but obviously you son't have to.
No I have PMR but surely that is a vascular illness
It is not classified as vasculitis though, that's why I specified that the survey is for vasculitis patients
It very much depends on who you speak to. John Mills was very adamant that PMR wasn't a vasculitis but this suggests the world experts do
........and considering the new 'directive' (based on all the research and studies that have been undertaken in recent years) to now move forward recognising and treating GCA and PMR under the same umbrella of GPSD....that maybe suggests this initiative hasn't yet filtered through to those who maybe need to know??
Very true and PMRPro said it was for PMR sufferers as well!
Know who I would believe.. and it's the same link as in PMRpro's post the other day!...😊
PMR is closely linked to GCA (type of vasculitis) They are both inflammatory diseases, but GCA is a type of vasculitis, PMR is not.
This may help clarify what the researcher is looking for. And to make a research valid we have to adhere to what they are looking for. They are specifically looking for vasculitis and fatigue, not reumatic, inflammatory diseases and fatigue. Sorry for the extremely long comment.
Title of the Project: How do individuals with vasculitis manage with fatigue in everyday life
in the UK?
Research Team: This research project will be facilitated by Jennifer George
What is this research about?
This research project will involve Jennifer George conducting a survey in support of Wendy
Bryant’s research on ‘rest-do days: How to manage fatigue’. Jennifer will be conducting a
data collection/analysis project. The aim of this project is to explore and discover how
individuals with vasculitis, manage with fatigue in everyday life in the UK. Vasculitis is long
term autoimmune disease where the blood vessels are attacked by the immune system,
resulting in inflammation, damage to organs, infections and/or another underlying condition
(NHS 2023). It affects individuals physically, emotionally, and mentally, which impacts how
they carry out their everyday tasks. Therefore, I believe this research will be important to
understand how these conditions impact their lives in these aspects, as well as create a
bigger awareness of the conditions that can also provide strategies for people who may be
experiencing similar situations.
Why have I been asked to take part?
You have been asked to take part in this research because the strategies that you may use
to manage vasculitis and fatigue, may be used to help others in a similar situation.
Furthermore, this information can encourage an increase of knowledge and awareness to
the condition and development of further research.
What will participants be asked to do?
This survey aims to explore and discover strategies that individuals with vasculitis use to
manage their fatigue in everyday life. Participants will be asked questions relating to their
experience with vasculitis and fatigue and how it has impacted them in their everyday life.
In total there will be 13 questions consisting of 5 close-ended questions, 2 rating scale
question, 1 Likert scale and 5 open-ended questions. The results of this survey will be used
to provide an awareness on the impact of vasculitis and fatigue as well as provide
suggestions of strategies that people with these conditions can use to help them cope in
their everyday life to support Wendy Bryant’s research on ‘rest-do days: How to manage
fatigue’.
12/09/2023
Are there any risks to taking part?
I do not believe there will be any risks to you from taking part in this research, but I will
respond quickly to any issues that may arise.
Will there be any benefits to taking part?
Yes. I hope that the research from the online survey’s will be able to provide information
with strategies of coping with fatigue. This hopeful will contribute to further research that
can used to help others in future.
Where will my information be kept?
The data will be stored safely on a password protected laptop/USB. This information may be
kept for up to 10 years before it is destroyed. Your name is not required when completing
this survey, therefore you will be anonymised.
Do I have to take part?
You do not have to take part in this survey it is completely your decision. You can withdraw
at any time without having to give a reason and without penalty. Not submitting the survey
is a withdrawal of participation and of data. However, any data that has been submitted
cannot be removed as the survey is completely anonymous. This means submissions cannot
identify which participant the data belongs to.
How do I find out more?
If you would like to be provided with more information on ‘Vasculitis UK’, please contact the
Director of operations Zoi Anastasa via email: zoi@vasculitis.org.uk.
If you would like to find out more about Wendy Bryant’s research, please contact via email:
wbryant@essex.ac.uk.
Regarding further information about this survey, you can contact Jennifer George via email:
jg19867@essex.ac.uk.
For information in relation to research integrity please contact the Research Governance
and Planning Manager Sarah Manning-Press via email: sarahm@essex.ac.uk.
What if I have a problem with the research?
If you are experiencing any problems with this study, please contact Jennifer George:
jg19867@essex.ac.uk.
If you are still concerned and would like to raise any issues or complaints, please contact Dr
Anna Pettican: anna.pettican@essex.ac.uk or the Departmental Director of Research Dr
Simone Coetzee: scoetzee@essex.ac.uk.
Thanks for explanation from reachers and this particular study -and if I still had GCA, I would have happily partaken.
But there does seems to be discussion/confusion/different views on subject - but then that’s nothing new 😊
ncbi.nlm.nih.gov/pmc/articl....
What do you mean if you still had GCA? I hope it means that after the initial treatment you have been in remission for very long time!
I have -since September 2016… 😊
Wow! Fantastic!
Yes it is, but unfortunately due to late diagnosis I have permanent sight loss in right eye… but such is life…
It is a future directive though. And as I mentioned above, VasculitisUK historically refused to recognise PMR as a vasculitis,
The research project doesn't have to do with Vasculitis UK. I was kindly asked by the phd student to circulate her survey. I am definetelly not an expert on PMR.
Wasn't saying you were or not - but we are. And PMR is considered a vasculitis. It is one of the things the student needs to clarify for her thesis though so maybe flag it up to her?
In fact - suggest she contacts us. Because we do have a great deal of experience in fatigue management in vasculitis.
"...and many PMR patients have large vessel involvement that may not be investigated for."
I can attest to this. I was treated with Prednisolone for PMR from October 2018 to December 2020 when I stopped taking it. In October 2021, I had a three-week period with headaches the like of which I had never experienced. When the headaches first appeared (no jaw claudication), I immediately sought help at the hospital, told them that having had PMR, I was afraid that I had GCA. I was examined and told that I did not have it. During the period when I had the headaches, I sought emergency help four times and each time I was told that I did not have GCA . My diagnosis in the end was tension headache, even though I do not usually suffer from headaches. I would mention that I was tested with ultrasound, given an CT scan, saw an ENT specialist (because I had some ear pain too) - none of which threw any light on the matter. Eventually, sometime in November, the headaches disappeared.
Between Christmas 2021 and New Year 2022, I began to feel unwell - feverish, tired. I visited my rheumatologist who examined me and said that I did not have GCA. However, because my CRP count was high, she advised me to go straight to Emergency. There I was examined and it turned out that I had both pneumonia and at UTI. I was admitted to hospital and treatment for the infections began. After a week, the doctor on duty, having read my journal, felt that he should bring in the rheumatological department and I was taken there for examination. On hearing my story, the rheumatologist I saw felt sure that the headaches I had experienced had been caused by GCA and I was given another ultrasound examination, which showed that I did in fact have the disease. I started treatment for it (February 2022) which continued until about three weeks ago. Since my CRP count has been too high again recently, it was decided that I should have a PET scan. Therefore, as they would only do the scan if I had been out of the treatment for a minimum of two weeks, and I had to stop it abruptly (was on a very low dose anyway) . The scan showed that I have large-vessel vasculitis (GCA) and a small b-dissection (aorta tear), which it appears can result from GCA. It has not caused me any noticeable problem (yet?) and I'll be seeing the appropriate specialists.
I have just started treatment again with Prednosolone (40 mg daily) but my rheumatologist is talking about the possibility of using a steroid-sparing drug (Roactemra) at the same time. Having read several articles about this drug, I am not sure that I want to venture down this path. It seems that there is some controversy about whether its side-effects outweigh its benefits. If anyone has experience in taking Roactemro, I would very much appreciate hearing their views on it (I do realize that people react differently to the different drugs).
I hope that my rather lengthy message might be useful to others.
I've been on RoActemra for about 18 months - I can honestly say I can't identify ANY side effects. Not even excessive infections. It has enabled me to get from 19mg pred and rising to be able to function down to 5-6mg with no PMR problems at all. The struggle now, after 14 years on pred, is persuading my adrenal function to wake up.
If you post asking for experiences you will immediately get a list of past related posts, it has been talked about quite a bit.
If you want more info on Actemra/RoActemra (tocilizumab) - then raise a new post - you will get answers as well as related posts ..
But this from FAQs- which may be useful -
healthunlocked.com/pmrgcauk...
Thank you, Dorset Lady, for your quick response and for the link you attached. Very useful.
As I just asked PMRpro, should I repeat my post separately?
You might get more uptodate answers - the FAQs were done a couple of years ago.... it's really up to you.. but a new one doesnt take long to do.. you don't need to go into too much details - just ask for others experiences... 😊
Many thanks, DorsetLady 👍😀
We two work as a team - and usually say the same. Sorry - was out bluing a small fortune on new jeans! The guy in the village only does top brand stuff but they ALWAYS fit and it takes quarter of an hour. I don't do Shopping ...
New jeans -wow! ..and great when they fit 😊
140 euros!!!!! "Free" shortening ... Thought about getting some during the summer sale but didn't get round to it, hoping what I had would last until the winter sales. They didn't. Going to daughter's graduation next week - designer jeans will be fine and have another life ...
..true -and enjoy graduation ceremony…
UK residents only? I'm in France.
Well I completed it when it appeared the other day (thinking I was being helpful) but I’ve got PMR not GCA. I’m sure I’m not alone in having done that so they might need to decide what to do with all the responses…🤷🏻♀️
It will be up to the authors of the study. I'm sorry - I consider PMR to be a vasculitis. And so do the top names in the field I work with,
And it seems to me if the pain we experience is caused by inflammation of blood vessels, why should it make a difference if those blood vessels are tiny (as in PMR I think?) or large (as in LVV and GCA)? PMR not an arthritis. So what is it?
Quite. And as PMR sufferers also suffer from significant fatigue and we all create individual strategies to deal with it, as do other vasculitis sufferers, I’d have thought our input might be quite useful. Anyway as you say it’s up to the authors to decide what to do.
Quite.
I am the PMR Columbia, South Carolina connection and wanted to ask you about Flu shot and PMR. I am currently thankfully off prednisone entirely and feeling fit!! I did not have the flu shot last year ( had covid but not flu) and have not yet had the jab this year. I am paranoid that it will cause a flair and i am blessed to be doing so well. What is your opinion? My Doc has left it up to me. HIS wife has never had a COVID shot so he is sympathetic to me. What do you think?? Many thanks.
I had a flu vaccination every year through my GCA years - so probably 4 in total … never had a flare caused by them, or anything else for that matter.
Thank you
I only got the flu jab after I moved here to Italy, I wasn't considered worthy in the UK despite living with 2 highly vulnerable people who WERE entiteld to one! It has never caused a flare, not even for a few days. I had real flu once - I was in bed for a week and it took weeks to recover. I never want it again.
Many thanks for your prompt reply.
I had mine again and have done for the last 6 years without any flares
I had the flue and Covid shots done on the same day. No reaction.
I was told pmr and gca are on the same spectrum
I think this is now more or less officially recognised! See PMRpro's link early in the thread.
Thanks HeronNSWill have a look.
I thought so too about the spectrum.
Hope you're having a good day x
It's about time, isn't it? There are so many oeople on here who've had both GCA and PMR, and people with PMR who've experienced some GCA symptoms, it seems strange now to think of them as being separate illnesses!
And, yes, thank you, it's been a good day. Cold, but sunny. In fact weather has been better lately than it was most of the summer which was drought (wildfires) or wet (floods) or sometimes very hot. I feel like summer never really happened this year. We don't have a garden now but a lot of gardeners felt the same way. Everything is still very green and it's hard to believe Christmas (and winter solstice) is only a few weeks away!
Good days are a blessing 🤗Having read quite a bit of PMRpro's link I didn't appreciate gca is interchangeable with pmr. I thought they were on the vasculitis spectrum but different to each other with the possibility of getting pmr or gca as the probability increases.
So is it reasonable to say pmr is really gca?
Wet here. Had a walk and got v wet. But its good to get out in the fresh air.
Hope you have a restful sleep.
Lovely to hear from you 😊 x
So is it reasonable to say pmr is really gca?
Not in my mind... they are not the same, but they are linked. Some patients have one or the other, some have both - but there doesn't seem to be a particular reason as to who gets what.
Article says -
"PMR is thought to belong to a disease spectrum that includes GCA, large vessel vasculitis and PMR."
... doesn't say they are the same.. but "belong to same disease spectrum".
Not quite the same as saying "pmr is really gca"
That's how I viewed it and this was how the rheumatologist explained it to me.Thank you DL🙂
x
👍
No, I wouldn't have thought they were the same disease. "Giant Cell Arteritis" actually describes a symptom which PMR people don't have (unless they are unfortunate enough to have both but I think relatively few PMR sufferers also have GCA). But I believe it is safe to say that in both cases inflammation of the blood vessels is the major factor - the difference being which blood vessels. And as DorsetLady points out Large Vessel Vasculitis is on this spectrum as well and, as far as I know from discussions on the forum, GCA is a specific LVV.
The benefit of including PMR in the discussion now (not us, the researchers and physicians) is maybe PMR will finally get its due share of attention. 
Done
Well I completed the survey. It has reminded me what a beastly thing this PMRGCA is. I had to write 4yrs 10months since it started! That’s a long time. It has robbed me! I know some have been robbed of more than I have and so shouldn’t complain. It would be lovely to find perfect management.
High enough and long enough on initial dose to get all built up inflammation under control … then same at each dose until your illness goes into remission and you reach zero (particularly useful if that happens at same time, but no guarantee🤦♀️ ). Throw in a reasonable measure of good luck with no flares (despite losing hubby during GCA) and it is achievable (I know) but doctors rarely allow you to do it. Fortunately mine did.
Not all perfect though as you probably are aware -sight in right eye lost prior to diagnosis -but you can’t win them all! 🌸
I'm not having problems with fatigue at present, so is it helpful for me to complete the survey?
You can still state your past experiences...
Hi, I have Takayasus? LVV.. could I be included?x
This is statement re survey - so absolutely -
The aim of this survey is to explore and discover how individuals with vasculitis, manage with fatigue in everyday life in the UK. Vasculitis affects individuals physically, emotionally, and mentally, which impacts their everyday life.
Calling all GCA patients in the USA....a research study.
Monotherapy with Actemra for GCA
Fatigue with GCA
Vasculitis poem - here goes
