Thank you to everyone who has read and replied with information and tips on helping me come to terms with this condition.I did forget to mention one side effect I had and am wondering if it has happened to anyone else.4 months after starting MTX my GP was worried about anemia and gave me 6 shots of B12 over 2 weeks to get my level back up again.I now have 1 shot every 12 weeks.I can honestly say I do not feel any different than I did before starting them.My doctor said my energy levels would rise,have not seen that and I have had these shots for 15 months.
It is so interesting reading other people’s stories as when I was diagnosed initially I had never heard or known of anyone having PMR or GCA.Interestingly after 1 year I did have a female cousin who had PMR.She and her GP worked together and she is off all pred and doing well after close on 3 years.She followed a very slow taper.We both have similar backgrounds,our fathers are both Scots,possible link,who knows.
I am very lucky my GP had seen this condition before and keeps an eye on me.Although we don’t have face to face appointments I am able to speak to her on the phone if I need advice.
I was asked by a few members why I am only on MTX.I can only remember that on one hospital appointment they always seemed very keen on going down this road.The registrar who wanted me on them did say that pred does not seem to work for me and that MTX was the natural progression.I have looked at all the DMARTS and they all have similar side effects.I do know that MTX is prescribed as it cheap as chips.
I have yet to meet anyone who has LVV,must be a very small club.
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Oxfordboy2
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Hi just to say methotrexate made me feel worse than the illness itself. I have LVV and have been on pred , pred and methotrexate, pred methotrexate and Toc. A very short time on pred and leflunomide. Now I’m just on Toc, 2nd time off steroids and I feel really well. Just about 4 and a half years since diagnosis. Perhaps anaemia was the problem for you or it maybe the methotrexate. It seems to suit some but is awful for others
Your journey has been much harder than mine.Does your rheumatologist think you will ever be able to stop your meds?Its worth noting that my hospital has always been talking MTX from my initial diagnosis of PMR/GCA through to my current LVV It would appear to me that not all hospitals follow the same treatment path.
"I have yet to meet anyone who has LVV,must be a very small club"
I suspect it is a club with a LOT of unidentified members since few PMR patients are investigated to see if they have LVV and it is estimated many do.
The anaemia may have been the anaemia of chronic illness rather than just low B12 which isn't a remedy as far as I know.
Your doctors are outliers in treating PMR/LVV with methotrexate alone. And pred only works for anyone when used correctly FOR THAT PATIENT. LVV would almost certainly have required a higher dose of pred than "just" PMR and some doctors are downright terrified of pred above about 15mg. Some "just" PMR patients need 25mg, even 30mg, at the start and many can't reduce that dose immediately. Doctors often then assume that the patient isn't responding - and throw the baby out with the bathwater.
A small secret club. It seems to be growing but I think we are just coming out of the shadows. In no small way thanks to the charity and this vibrant forum and the stalwarts who are here every day, come rain or shine - even Christmas Day, high days and holidays, Pandemics, natural disasters - always. I have seen the profile of our diseases rise exponentially over the 8 years I have struggled through, PMR then GCA/ LVV. What a blessing! Of course DorsetLady and PMRPro must take the biggest bow. ⭐️⭐️🙏
I have LVV, as I said on our last post. Or do you meet you haven't met anyone with LVV in the flesh? Well, nor have I. I haven't even met anyone who had ever heard of it. but there are quite a few of us on this forum. We don't seem to get off pred very quickly, whichever steroid-sparers we are taking.
It does frustrate me when docs say that Pred doesn’t always work when it hasn’t been given a chance so it becomes a self fulfilling prophecy. Time and again we see people reduced far too quickly so that the Pred appears to not be working but it is simply that the Pred dose hasn’t been tailored to the patient’s autoimmune activity and instead, an arbitrary schedule. Some patients are told that they can’t have PMR/GCA because the Pred has worked when it was simply too fast a reduction plan, yo-yoing or a too low starting dose. A second opinion has brought them back to square one.
Regards LVV, I read a paper describing finding LVV in patients during post mortem often enough to suggest it could be more common in patients than thought. There was one where silent LVV was found during research into cancer patients when they used PET scans looking for something completely different. It was in enough number and with no relation to their cancer to suggest it was worth another project altogether. I often wonder/worry (depending on my mood) if my GCA is smouldering unseen in larger vessels.
I do wonder how many people with the vague malaise type symptoms (and a lot more) that we all know so much about actually have LVV but no-one ever looks for it. And if there aren't overt symptoms - you must be cured. Whereas in reality it is bumbling along in the background doing damage.
Hello, a little message to me on this forum told me that I had experience with Methotrexate. I have to confess that I have it in my cupboard but have not started it: first of all I had a possible stomach cancer scare (halleluiah the lump disappered), and then I started a persistent UTI which is antibiotic resistant, so I feel I have enough on my plate without starting yet another drug. I'm interested to read about your MTX experience and will follow your posts with interest.
I have LVV. Methotrexate was offered to me when my initial allocation of tocilizumab was coming to an end. After listening to others on here, I wouldn't touch it with a bargepole. I'm glad it seems to be working for you, although it's not prescribed specifically for LVV, it's supposed to enable you to reduce your dose of pred, or that's how it is in Australia anyway.
Hi LemonZest,I like you had much the same reaction when offered methotrexate,in fact I sat on it for 2 weeks before I decided to give it a go.Due to the answers on this forum I seem to be on my own in taking only 1 medication.It has not been an easy ride and as I said previously I don’t feel a lot different on it.When it was offered there was no alternative.I think our hospitals have their own way of treating it.My latest blood tests have come through and my crp is 2.2 so it would appear to be working.you and others have reported it is not usually prescribed for LVV so I will ask the question at my next appointment.
I have just joined the same club. My history in short is:
Diagnosed for PMR in October 2018. Treated with Prednisolone until December 2020 when I stopped any medication.
Diagnosed for GCA in February 2022. Treated with Prednisolone since but it did not succeed in reducing my ever-high CRP.
PET scan in October 2023, which showed GCA (a form of LLV) but mainly in heart area. Also showed a small tear in the lower area of the aorta (b-dissection). Have for the last 10 days been treated with higher doses of Prednisolone (40 mg) (feeling good) and will see a rheumatologist this week to discuss taking a steroid-sparing drug (Roactemra) so that the amount of Prednisolone I am taking can be reduced. Although the vascular specialists have said that my aortic tear is "peaceful", I shall be seeing a cardiologist too.
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