With PMR have you developed a persistent chest cough?

Hi Eileen, happy New Year to you I have found your reply very interesting as I to have had a constant cough since getting PMR and taking preds nearly 3 years ago I did have have slight cough when I gave up smoking 6 years ago but recently it has given me shoulder and backache with it like Leonard. I also have a trapped nerve (sciatic) which is causing me an ankle problem but hopefully this is being dealt with. When you say it improved by upping your pred dose can you advise as by how much as I have been on 13mg for 2 months but upped it to 18mg the last 2 days but without any improvement. Thanks again for all your help. Best wishes Dav (tavidu)

thanks Eileen.  Can you give me a brief idea of what vasculitis is, I googled it but it gets technical.  Is increasing my steroids a good way to start?  Can doctors determine if it's vasculitis or would they likely treat it with more steroids as well?   I may have mentioned that this past week I've been fighting a virus, likely my immune system has made me much more vulnerable to this, plus my CRP jumped in the last 2 months from 10 to 32 where it hasn't been probably since my first major symptoms over 3 years ago.  I'm seeing the discomfort creeping into the lower neck in the last 2 days in addition to the shoulders and upper back and that is a big warning sign for me because of it's potential to go to the head.  My own experience tells me to up the steroid dose slowly over the next few days, as much as it takes to get relief.  I've been adding in Extra Strength Tylenol but I feel that only masks what's happening and can hide a major flare up.  Do you know if the Tylenol is constipating as this is becoming an issue as well.  Can you recommend something to take the Tylenol's place that assists without irritating the stomach?  I'm pretty fortunate to be able to reach out here for suggestions when my medical support here is so lacking!  Thanks again.

Vasculitis is inflammation of the walls of blood vessels. In GCA it is in larger arteries, in PMR it is probably the capillaries in the muscles but in some cases it is also larger blood vessels. That is the role of the pred in PMR and GCA - reducing the inflammation in the blood vessel walls.

Over xmas is stressful - and you have probably been eating foods that are inflammatory. Plus you have an infection - all potentially flare-triggering. And it sounds to me as if there is a bit of increased inflammation going on there somewhere over the last 2 months - and now it is coming home to roost. I'd say adding 5mg to where you are is about right to hit it hard - providing that's enough.

No idea about your tylenol - what's in it? I understand there are different sorts but I'm not familiar with them. I can't use anything except paracetamol/acetinophen or whatever. It's useless for me so I don't bother at all!

thanks for this latest information Eileen.  I did google vasculitis again and can see where one wants to quickly ascertain what's going on here because left unchecked it can be life threatening.  I'll start by increasing my steroids here and see what happens, plus today try to get an appointment with my doctor.  Do you have any idea how they determine if one has vasculitis?

I think if it were that bad you would feel pretty ill - at least the people I know with aortic vasculitis were NOT well at all. One was told by Baskhar Dasgupta that she definitely didn't have GCA because the biopsy was negative (hallo sir - you ARE meant to be an expert in that field!) but she insisted there was something wrong so he sent her for PET/CT which showed extensive inflammation in the aorta, pulmonary arteries and brachial arteries I think it was. He wasn't polite enough to admit his error to her face - sent a minion. He then said she didn't need ongoing monitoring despite some symptoms - she eventually had a heart attack. Now she has finally voted with her feet and is under a vasculitis specialist at the Hammersmith in London.

It's a difficult one - there are scanning methods that show the inflammation - PET/CT or MRI does but is very expensive and not available everywhere. You can't biopsy of course except for the temporal artery but there are too many doctors who aren't sufficiently aware of the limitations of that when the vasculitis isn't cranial. It can still cause the typical GCA headache and jaw pain. And that, it seems, includes the supposed experts. It all depends on which arteries are involved - the brachial artery can be seen using ultrasound but the rest can't. Unfortunately I gather that any dose of pred can be enough to reduce the results on the PET scans. I do know one person who was persuaded to stop his pred to have a PET scan and then was unable to get the symptoms under control subsequently.

Some forms of vasculitis have blood markers in the form of antibodies. Others cause rashes. But basically at present it comes down to symptoms that can't be explained any other way or specific symptoms to organs that are involved. Like cancer, it isn't a single disease which complicates things. Most rheumies will claim they are vasculitis specialists - but often aren't really. 

Some forms of vasculitis are managed using chemotherapy so long term pred is avoided - but they do tend to be the really rather nastier ones involving large organs. GCA-type vasculitis of the sort we are probably talking about here isn't significantly different from what we've always had - just perhaps needs more pred to manage the symptoms. Monitoring for aortic aneurysm subsequently is perhaps more important and taking any sign of cardiac problems seriously and not just dismissing them.

Hello again..interested to know if cough mentioned is similar to mine...I need to keep clearing my throat as feel a little phlegm there (When there usually isn't) I have large vessel variant, which I guess is vasculitis. Have had this cough for about a month, reducing steroids 11/10 mugs alternate days at the mo. Planning on going slow at 9mgs.

Perhaps you could PM the Hammersmith specialist to me Eileen, would be handy to know.   Thanks

Look for Professor Mason

I would describe the "probably thoracic vessel involvement" symptoms as being a need to cough/clear your throat of something you can't say is really there, just as you describe. There are other possible causes of course. 

You have the LVV variant - i.e. can't say it is GCA as there isn't a biopsy - so how does your consultant monitor your dose being enough to manage the inflammation? Or claim to know...

You might find this thread on the Healthunlocked vasculitisUK forum of interest - search "has-anyone-else-got-large-vessel-vasculitis-i-was-told-this-week-i-have-this-.my-problem-started-12-months-ago-with-cramps-and-twitching". Both Mason at the Hammersmith and Jayne at Addenbrookes are mentioned.

There is repeated comment "I've been told this is very rare" - but these are several patients who have been investigated properly. I would lay odds that if every one of us with such symptoms were subjected to PET-CT they would find there are a lot of us with relatively mild disease states and some with rather worse disease. Of course, then the question is how risky is it to not manage us effectively. No doubt they might find out too late - if they do a pm to find out.

thanks...I was offered a PET scan but opted to get started earlier on steroids, had a CT scan to eliminate poss CA instead. I do wonder about symptoms to guide steroid dose too as no 'headache' to help us as with GCA.  all a bit scary

will check out the forum link 

Given there is currently "no cure" I suppose as long as we feel OK that is a good start - but I would like to know my thoracic arteries are not self-destructing quietly in the background! The aorta around the heart region was fine last year, they saw nothing on u/s but ...

I had a flare at the beginning of the year that was almost certainly affecting the pulmonary artery judging by the breathlessness but despite dropping leading questions no enthusiasm was shown for deeper investigations. Hey ho - I can't really complain and I definitely don't rush to reduce!!!

Interesting.......About a year and half ago, I had a long spell of debilitating headaches.  Came on suddenly at first.  Acute pain in the temple area, with pulsating sensation when touched.  Imaging done and some testing, and no diagnosis was found.  Intensity and frequency subsided and have been very infrequent the past 3-4 months.  I just had a chest xray and they found an enlarged aorta.  3.6 cm.  So they diagnosed that as NO aneurysm.  Now I am reading that this can be part of the PMR scenario.  I am doing very well on 20 mg starting dose Prednisone.  14 days since starting and pain and discomfort down from a 10 to 2.5.  

Originally when the PMR was in its early days I had a period with scalp pain that was absolutely typical of GCA as well as jaw claudication. The most painful symptom I ever had was thigh claudication that started after about 2 mins on the cross-trainer. The scalp pain and jaw claudication disappeared entirely after a couple of months - so I think it is not unknown for inflamed blood vessels to recover spontaneously. But how to prove it???????

I don't know how old you are wayne - but aneurysms occur even without vasculitis and they are felt to be late consequences of GCA, i.e. several years after the illness. Is it close to the heart or lower down?

Not sure.....believe it is in the Thoracic area.

My cardiologist is not concerned.  I see him again in a year.

No - 3.6cm is very small - they will monitor it to see how it progresses. 

Yes that is what he said.  I had triple bypass surgery in 2009.  He said the enlargement can happen from that??  He also said that some people just have larger than normal aortas.  So good to have a baseline measurement.  Thank you for your fantastic knowledge and advice.  Really comforting and helpful to talk with people who have this condition. I am feeling positive about getting this under control so we can travel again.  :-)

 

Do very much agree, it's the uncertainty of all this that gets to me, I'm at least going for my Dexascan tomorrow, perhaps there will be an App to help us soon!

Have explored the V forum, very helpful.

I still get a thumping heart after the slightest thing, people will say steroids to me but I wonder if part of the LVV.   At least my Anca blood test was -ve