Having a flare…

[Phoebenooby]

Hello, I joined this group when my daughter was going through IVF and had a baby boy born with a CPAM an and found it very helpful. I haven’t been in her for the last few years but now have PMR and blocked femoral arteries I need help!

Started overnight with hip thigh and buttock pain last June. A month later I also had shoulder pain and paid a lot of money to see a chiro. Nothing helped, went to the drs several times (phone appts) just gave me different pain killers etc. 6 weeks later I got intense calf pain on walking, googled it ….PAD a peripheral artery disease….. contacted GP again had a Doppler, blockages in both legs. Had appointment with the vascular team and when I described my muscular type symptoms, the registrar said ‘I think you have PMR’ I had never heard of it, googled it and it sounded exactly like my symptoms. Rang GP asked for a blood test, negative….. end of consultation 🙈 I struggled all through Christmas, by end of January I had lost a stone and was crawling and in agony. I begged for steroids, they did another blood test, still negative….but agreed to try pred! It worked within hours…..

I have tapered easily down to to 7 from 15mg but Dr asked me to do 6 and 5 on alternative days….within 10 days I had dreadful buttock pain…..I have taken 11mg for the last 3 days, pains improved but not gone …. Any suggestions? By the way I have had a PET scan as my blockages are unusual and bitateral, they think it’s PMR infammation that’s caused it…

[DorsetLady PMRGCAuk volunteer]

Normal advice is to add 5mg to last dose you last felt okay…so 11mg is fair enough, but you need at least a week to see an improvement. I usually suggest 7-10 days, but if necessary you can stay there for 14 days without impacting the drop back down.

Suggest you make that 7mg [no lower] -and would say you have hit to that dose quickly - so ease up on the tapering from now on. Preferably 0.5mg a time - and a slower tapering regime rather than alternate day reduction. [too hard on body].

Few links- 1st on flare protocol -

healthunlocked.com/pmrgcauk...

These are 2 slower tapering plans - similar but laid out slightly different - choose which takes your fancy-

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

As you are relatively new - maybe have a look at this as well -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Hi and welcome here - we aren't quite the group you were involved in before, all the forums are separate but we are more use for info about PMR!

It sounds very much as if you have large vessel vasculitis that is manifesting as PMR symptoms. Have you been referred to a rheumatologist? If not - it might be an idea because the vascular team deal with something a bit different.

You aren't reducing relentlessly to zero - you are titrating your pred dose to find YOUR ideal dose: the lowest dose that gives the same result as the starting dose did. It sounds to me as if 7mg is absolutely your limit at present - you will get lower, just not yet. Don't allow any doctor to try to force you to go lower for now, take a couple of months respite before trying to get lower.

Three days is a bit soon to expect full relief. Patience!

[Phoebenooby in reply to PMRpro]

Thank you! I had a PET as a testing for LVV but they Don’t think that’s what it is as the blockages are isolated areas in both femoral arteries. Photo of their findings added. I was expecting the raised dose to work immediately because it did when I started it in January! So stay on 11 for a few more days and hopefully it will work? If it does work, and I am on othe high dose for less than 14 days, do I just drop straight to 7 mg the next day? Thank you

Hospital PET findings

[DorsetLady PMRGCAuk volunteer in reply to Phoebenooby]

If you read the link I sent you will see that as long a you do not stay on higher dose for longer than 14 days you can reduce to 7mg [or maybe as PMRpro suggests 8mg] in one go.

[Phoebenooby in reply to DorsetLady]

Aah did read the link yesterday and thought that’s what it said! Thanks

[PMRpro Ambassador in reply to Phoebenooby]

OK - fair enough. They have thought of it,

However - it may be that it is worsening and needing more pred to manage the inflammation. It does happen. But don't drop back to 7mg - go just above where you had problems.

[Phoebenooby in reply to PMRpro]

Thank you, I have a telephone appointment on the 13th with my GP. She obviously thought I was nearly done because she’s removed my pred. Repeat prescription from by NHS app!

[Longtimer in reply to Phoebenooby]

My advice if you have to is, find a more understanding GP!.....good luck....

[PMRpro Ambassador in reply to Phoebenooby]

For goodness sake - is she TRYING to make you worse! You will need pred for a total time of at least a couple of years. Can you see a different one?

[Phoebenooby in reply to PMRpro]

You’re lucky to see anyone! I saw several different doctors at the practice with classic PMR a pain and not one of them mentioned PMR and I had never heard of it so just carried on in agony …. I will say I want to taper more slowly and see what she says…🙈

[123-go in reply to Phoebenooby]

I would be very tempted to ask her how many PMR patients she has on her list! I definitely would say, “I want to taper more slowly and would like you to work with me as I have gained a great deal of knowledge through the PMRGCAuk charity which was set up by PMR patients with a respected rheumatologist (Professor Dasgupta) at the helm”.

[Lonsdalelass in reply to 123-go]

Great answer!!!!

[borednow in reply to Phoebenooby]

I changed Practices - best thing I ever did. Quick and easy.

[DorsetLady PMRGCAuk volunteer in reply to Phoebenooby]

Bonkers! Need a GP who has some idea of your situation..

[SusannahMM]

Hi, I think this is beyondca GP, good or bad. Your symptoms sound similar to my onset last year. My blockages were also in my femoral arteries, as well as in my arms.

My GP was useless. I got so desperate I saw a vascular surgeon privately, luckily he figured it out and referred me to Professor Jayne at the Addenbrookes Vasculitis Clinic (on the NHS). I was diagnosed with LVV (either extra-cranial GCA or Takayasu Vasculitis, they haven't quite decided yet - apparently this presentation is quite rare) are AMAZING.

I was put on Pred (30mg now down to 4mg and tapering off), Methotrexate and Tocilizumab. I am now in remission.

I don't know where you are in the country, but if you can get yourself referred to Addenbrookes it is worth it - patients do come from as far as Scotland apparently.

Good luck.

[Phoebenooby in reply to SusannahMM]

Hello, thank you! Amazing to meet someone else with this strange thing! Did you also have PMR? did the steroids actually help the blockages? I have identical mirror images in my femoral arteries, but none anywhere else. The PMR symptoms started a few weeks Before claudication in my calf’s. ( I never know if it’s calf’s or calves 😊) Did you get the referral from your GP? a when I asked for a referral to a good vascular surgeon last year I was told they couldn’t refer me as their primary carer. I have no further appointments with either the vascular team or rheumatologist!

[SusannahMM]

Hi, Sorry I haven't replied - difficult couple of days with a family crisis (not me, just for once). I haven't forgotten you - I will answer properly soon, promise!

[Phoebenooby in reply to SusannahMM]

No problem, hope you get sorted x 🙏

[SusannahMM in reply to Phoebenooby]

Hi.Interestingly, the stenosis in my femoral arteries is also identical. In my case, this is because there is vasculitis in the aorta.

Re the claudication - both the vascular surgeon and the vasculitis professor advised me to walk as exercise. It is possible to improve the leg circulation as the blood vessels will find new pathways. I was told to walk as far as I could until the pain was "good" (!!!) - at the time that was only 150 yards. Then rest for 5 minutes or so until the pain stopped, walk until pain again, rest again. Do this 3 times, turn around and then do the same going back. To do this every day and to treat it as exercise - so trainers not normal shoes, same route each time etc. It's about pushing the legs enough, but not too much. And it's about being consistent.

I live on a long straight road, so we would note the house numbers I reached and take heart from each little bit of improvement. I can't honestly say I did it every day, but at least 3 times a week. It was really boring and quite painful. But it was worth it. The upshot is that I can now walk over a mile and usually without any claudication pain. The professor says this is mostly due to the exercise.

Re the referral. I'm confused. As far as I understand it, it is Primary Care who makes the referral.

I suggest that a "wait and see" approach just because they haven't seen this before is not giving you the best health care- they should be seeking advice from the experts.

This isn't going to go away on its own.

I would suggest talking to a different GP and being pushy. I find it helps to take someone in with me to advocate on my behalf. If it were me, I would ask them to send the PET scan + report to Professor Jayne/the Addenbrookes Vasculitis team. They are THE experts, and will know about the rare variants.

Even if this is a long way for you to travel for appointments, I think it is worth it to get a proper diagnosis and treatment plan, after which you can be treated locally.

Good luck.

[Phoebenooby in reply to SusannahMM]

Thank you for this, yes I was told walk, walk walk…. I did email Prof Jayne and explained my story and asked about asking my GP a for a referral to see him, but he did respond giving me details of the Rheumatology dept at the Nuffield in oxford and said they would be the appropriate referral 🙈 but that’s the ones I have already been seen by and suggested watching and awaiting!

[SusannahMM]

Oh, that's disappointing, I'm sorry. I note that your inflammation markers are normal, which might be why everyone is saying wait and see. What I would say is, if he is recommending the Oxford Nuffield team, he trusts them. I guess keep walking and follow the advice on here about tapering. And maybe find a GP who actually cares that you're in pain.

I've just started tapering from 5mg to 0mg, so holding my breath and hoping...

[PMRpro Ambassador in reply to SusannahMM]

OTOH - HE may trust them but a few people on the forum over the years have found the Oxford team difficult as they aren't very willing to hear the patient's side.

Though to be fair - masterly inactivity is an approach that sometimes is the correct one.

[Phoebenooby in reply to PMRpro]

That’s very interesting and very disheartening ….. the NHS aren’t the best at the moment are they? I just feel completely stuck, how does no one have any answers? If you google blocked femoral arteries, there is a type of GCA that than cause blocked femoral arteries particularly like the ones in your head that affect the eyes. I don’t understand why I am not being treated as that? I am worried about the damage the blocked artery is doing without any treatment …. I am not rich but could pay for a consultation with a specialist, but could they use all the scans I have already had or would I need to pay for them again?

[PMRpro Ambassador in reply to Phoebenooby]

I think patients tend to think there is an answer to every ill when in fact the masterly inactivity they are employing is possibly the way to go. There are risks associated with surgery and every vascular unit would start with the walk walk walk instruction. The results can be impressive for the patient who engages and tries. I suppose to some extent it is a screener for later - because the surgery and rehab is essential for a good result. If you really did try with the walking instruction they can also assume you will make an effort with the rehab - without which, the expensive and slightly risky surgery is a waste of resources. It may not get worse, it may get much better - and you are able to function without surgery. Without knowing what they have found it is difficult to know any more.

[Phoebenooby in reply to PMRpro]

Hi, vascular have never mentioned surgery, but they have always been unable to find out the cause of my blockages, they are not blocked with calcification, they think they are narrowed by inflammation. When I started the walking, it was so hard because I was also suffering from undiagnosed PMR and in so much pain, it was a struggle to get out of bed without walking! I suppose I am hoping when/if the inflammation from the PMR goes, the inflammation in my arteries may go as well… 🙏

[PMRpro Ambassador in reply to Phoebenooby]

It should improve if you are on the right dose of pred to manage the inflammation - and that is why they want to wait and see,

[Phoebenooby in reply to PMRpro]

My highest starting dose in January was 15mg, I know when treating GCA it’s much higher, but no one has suggested trying the higher dose. I got down to 5/6 mg but had a flare so have been on 10 for the last 10 days

[PMRpro Ambassador in reply to Phoebenooby]

I think a more pertinent question is actually whether you have LVV - and it usually gets more than "just" pred to tackle it.

[Phoebenooby in reply to PMRpro]

I see, how will they know? The PET scan showed possible focal vasculitis whatever that means !

[PMRpro Ambassador in reply to Phoebenooby]

Small areas of inflammation that are possibly due to inflamed blood vessels.

[Phoebenooby in reply to PMRpro]

That makes sense, when my PMR started overnight, I left it for a few weeks and paid to see a chiro because I had sat cramped up for 2 hours grooming my dog the day before it started, before I knew I had PMR or blocked arteries I had thought it was me ‘over doing it’ I wonder if sitting scrunched up may have somehow caused it where it is?

[PMRpro Ambassador in reply to Phoebenooby]

Won't have CAUSED it - but may have contributed to how you felt.

[Phoebenooby in reply to PMRpro]

This sounds like my problems… pubmed.ncbi.nlm.nih.gov/161...

[PMRpro Ambassador in reply to Phoebenooby]

You've reminded me, I've seen it before. You should offer a copy to various medics!

This idea that GCA is always found in the temporal artery and not anywhere else ...

[Phoebenooby in reply to PMRpro]

I sent it to the head of Rheumatology at the Nuffield! 🙈

[SusannahMM]

Oh, that's bad news. I am so fed up with doctors not listening!