All ok but.......

[aladymo]

Diagnosed March 2018 PMR - 10 Mg prednisone. Severe claudication in right calf, very weak pulse. Re-diagnosed oct 2019 GCA , Vasculitis 60 mg prednisone/methotrexate. All ok but .......no change in Claudication ( pulse is a little stronger) is this separate or part of the PMR/GCA disease? Went to vascular surgeon, ( year ago - PMRpro advised) had ABI test , going for CT Scan tomorrow. ( on 20 mg pred tapered very slowly - so far so good.) Anyone else have PAD as well? I have good team of doctors ( rheumatologist and vascular) basically doing exactly what they tell me except tapering - that I’m doing slower than they want. 😱

[PMRpro Ambassador]

Impossible to say - it may be due to inflammation of the leg arteries from the vasculitis or it may PAD developing due to the inflammation originally having caused scarring on the inside of the arteries. What did the vascular surgeon say a year ago?

[aladymo in reply to PMRpro]

Femoral artery was blocked as was artery in upper arm. ( 82%). Went on 60 mg pred 20% improvement he was very impressed with results. ( not in physical walking). Scheduled CT scan which is tomorrow. He diagnosed me as having vasculitis before the rheumatologist

[PMRpro Ambassador in reply to aladymo]

Wonder how long you had had GCA before it was diagnosed. It does increase the risk of PAD.

[aladymo in reply to PMRpro]

At least 6 months. ( maybe a year )

[PMRpro Ambassador in reply to aladymo]

Or even longer but not causing recognisable symptoms...

[Ruadh]

Hi there. Yes. Claudication here. Ended up barely able to walk, extreme pain. Was put on a walking programme, to to help build up the capilleries, see if they could take over better blood supply. Worked so-so, some days could barely cross the road, other days, could about 'cope'. Then. One early morning awoke in horrendous chest pain. Really bad. AE by ambulance - only a cottage hospital. Outside their league. Then home. Then coughing up blood, which I collected in a plastic mug as 'proof'. Good I did so. Went on coughing up blood. So, jumped in my car, went to a different hospital. Excellent duty doctor, who recognised the problem. A pulmonary embolism. Was hospitalised for 10 Days to stabilise. Put on Heparin, then just Warfarin. Had also developed a hideous bronchitis, lungs full, infection caught from staff at the cottage hospital : two of whom were coughing all over the patients !

Appalling claudication. Ultrasound, doppler ultrasound and also a CT / Arteriogram (with contrast) - well taken care of in advance. Left leg, DVT. More walking programme and warfarin. Then, acute episode of severe critical ischemia. Emergency hospitalised. DEB / drug eluting balloon procedure : no stent, does not really work well in the popliteal artery, and the new stent contains 55% aluminium, to which I am highly sensitive. NO aluminium, am so reactive. So, if reactive to base metals, then, N.B., ***always ensure that fact is carried through on yr medical notes. This is important.

Was very well looked after - they saved my leg ! That was over 10 months ago. Can now walk. But do have a lot of cramping and rest discomfort in the leg. But that could be summat else going on, as two follow up consults have me in the all clear. Still, needs following up.

Hope this has helped. But would reckon yr vascular specialist will prob call for colour Doppler ultrasound and possibly followed up with a arteriogram / contrast. The contrast is iodine. Drink copious amounts of water - if have ever had kidney probs, then *must bring to attention, as iodine contrast can injure the kidneys !

[aladymo in reply to Ruadh]

Having contrast CT tomorrow. ABI has been done twice and will be redone when I go for scan result. Thanks for sharing your experience you’ve had quite the ride.😷. Continued improvement to you ✔️. My claudication is very bad as well, but my flexibility is amazing. ( maybe the pred!)

[misha453]

Yes, I have PMR. then developed GCA and PAD. My first rheumatologist insisted PAD was only caused by atherosclerosis (but he also thought PMR only lasted 2 years and that a rising SED rate was no cause for concern!) My current Rheumatologist says GCA can be a contributing factor to PAD and likely contributed to mine since I was only 55 when it was diagnosed and I had no other risk factors except GCA. My vascular surgeon said the PAD was caused by atherosclerosis. He prescribed exercise, statin (because my LDL was not below 70) and surgical procedure to clear the occluded femoral artery. I am able to walk 3 miles a day and swim 2000 meters 3 times a week, but all activity involves pain now.

[PMRpro Ambassador in reply to misha453]

I think one theory is that the GCA causes scarring on the inside of the arteries - and the atherosclerosis forms on the scars ...

[aladymo in reply to PMRpro]

Rheumatologist said full recovery could depend on scarring in arteries ( caused by GCA).

[aladymo in reply to PMRpro]

Went yesterday to rheumatologist. GCA is inactive. Yay! Reducing pred ( still slowly). Says GCA will be with me for life , and could easily flare up again once off pred. ( thinks methotrezate for life would be a good choice ). He feels the claudication is from scarring in arteries. Once vascular dr sees scan , I will be given options I imagine. ( not easy choices since GCA is dormant in my body). Stent could be dangerous. I’ve been trying to walk 30 minute periods (with pain like crazy , so stopping and starting). Think I’m improving ! ( after2 year’s!) Could be wishful thinking.

You were right on PMRpro with my journey from the start. I am so grateful for Your knowledge and understanding. 👍

[PMRpro Ambassador in reply to aladymo]

Um - how does he KNOW the GCA is inactive? And on what grounds does he believe life-long methotrexate will prevent it returning? Current thought is that it does little with relation to GCA and all the people I know who have had GCA and got off pred have been in remission for up to 8 years at present. Without ever having had mtx mentioned to them.

[aladymo in reply to PMRpro]

Blood work is all good , and claudication no worse. ( if a/I active would not be). I’ll ask about the continuation of meth closet to the time when I’m off pred ( might be awhile yet 😱)

[Ruadh in reply to misha453]

Would be concerned about the first rheumatologist stating PAD only caused by atherosclerosis ! Check out 'stasis' - which is a big *known factor leading to PAD ! That is, sitting too much. Mine is statis - laptop computer, my umbilical cord... <VBG>

[misha453 in reply to Ruadh]

Yes, first rheumatologist was useless. My favorite comment of his was, "I don't treat Sed rate, you must decrease the Prednisone."... said when my Sed Rate had risen from 20 to 39 and I was on my way to being diagnosed with GCA by another doctor.

[PMRpro Ambassador in reply to misha453]

What a clown!!! Most rheumies count on sed rate!!

[Ruadh in reply to misha453]

Hopeless - Total incompetence. Sigh. Good you dumpted him - sad for remaining patients...no good !

[Waterfeature]

Hi I use to take prednisone in the mornings but awoke with aches and pains. I was kindly advised on this forum to take prednisone just before bedtime and it did the trick but I started getting severe cramping in my calves and feet. My sleep was affected some much I reverted back to preds. in the mornings again. I do wake with aches and pains but it’s bearable and I’m ok within an hour.

I do get cramps during the day but it’s bearable and I can walk it off. I hope this helps, good luck

[Oxford8]

What is PAD?

[PMRpro Ambassador in reply to Oxford8]

Peripheral Arterial Disease - when the arteries in the arms and legs become damaged and blocked for some reason so that blood can't flow through them properly. It is also called PAOD, Peripheral Arterial Occlusive Disease which expresses the lack of blood flow better.

[Oxford8 in reply to PMRpro]

Thank you. 👍

[Hunter134 in reply to PMRpro]

What are the symptoms of pad

[PMRpro Ambassador in reply to Hunter134]

Claudication in the legs and sometimes arms. Claudication is cramp that starts after walking some distance but stops when you stop walking only to start again when you walk again. Some people get cold feet and hair stops growing on their legs. When it gets really bad the pain may also be at rest or while in bed.

[Blackcat1M]

what does PAD stand for please.

[Hidden in reply to Blackcat1M]

See pmrpro explanation above. Peripheral arterial disease.

[aladymo]

Update!! CT scan not complete. Will redo ASAP. ABI redone , back to where it was at beginning. ( no improvement - either first test was in accurate or I could have hardening of the arteries !). I hope I am not on all this medication for no reason if it is hardening of the arteries. ( stent possible , but not if vasculitis involved). Next CT will show leg/arm arteries. Was told to walk as much as possible the more times I get the pain the better. ( stop when pain comes , continue until comes again for 1/2 hour). Very frustrating 😱. Btw pet scan and ct scan done in October vasculitis was diagnosed ( hence the 60 mg).

[Hidden in reply to aladymo]

Oh no. Didn't they know it wasn't done properly before? Don't hurt yourself too much.🌻

[aladymo in reply to Hidden]

Was not ordered properly from Dr. He did aorta, abdomen, pelvis, thorax ( forgot run off). Now I wait for results and consultation.

[Hidden in reply to aladymo]

Hopefully that won't take very long!

[aladymo in reply to Hidden]

Me too.