Diagnosed GCA April 2018, down from 60mg to 17.5mg Pred. Need some advice please. For the last 3 months or so I have been struggling with a bad back ache and also wobbly and painful legs. I can only walk a couple of hundred yards and have to stop and rest a while. I also get quite breathless. Is this a sign that I have also developed PMR. I mentioned it to my GP who was quite non commital (can't spell it!) and he said "Well you are on pred anyway, so if you have then there is nothing else I can give you!" So, how do I know that I have PMR? Any advice would be gratefully received. I am currently awaiting a rheumy appt. from last November. Apparently there is a very long waiting list . TIA, JanboC
Can GCA lead to PMR and what are the symptoms? - PMRGCAuk
I don’t have PMR so can’t comment on the symptoms too much but I will say, don’t underestimate the weakening effect of Pred, especially when you’ve started high. It accumulates and leads to being very susceptible to strains and injury. To help the PMR experts, where exactly is the pain and can you describe it and how it comes on?
Thanks, SnazzyD. The pain in my back is a dull ache, all the time, but gets worse when I walk or sit down for long periods. I struggle to get into a standing position and then have to stand still for a few seconds before I can move. Bending down can be excruciating. Legs ache all the time, but when I have been walking a bit they start to get wobbly and I have to stop. That pain is mainly in my calf muscle, and then goes into the hips. I would say that the back pain is the worst and have noticed that I am walking differently than I normally do to try and ease the pain. Maybe a stick would help?
Lower back? Is it on both sides?
So the GP says you are already on Pred so does this mean he is saying that if it is PMR there’s nothing else he can do or is he saying that because you’re on Pred it can’t be PMR? Did he examine you? For the first, sometimes PMR needs a bit higher than 17.5mg and for the non PMR theory, what does he think it is then? Telling you to go away and get on with it when you are rather crippled by it is not reasonable. Have you got other pre-existing musculoskeletal issues?
Both sides of the back. My GP is actually very good to me. Without his intervention I could have gone blind overnight. He arranged for the eye clinic at a local hospital to see me at 6.30 one evening and I was there for 2 hours and came away with 600 5mg tablets of pred. I got the impression he meant that because I was already taking pred there was not a lot else he could do. (I think he is a bit miffed that his role as Primary has been taken over by the opthamology clinic) I have no other pre existing musculoskeletal issues. I have an appt. to see my GP again on 29th March and go to the eye clinic on 2nd April.
It’s quite possible that some with GCA will also have PMR, but hiding under the radar of high dose pred. The doses used for GCA being much higher will ‘clear’ the inflammation from PMR without even blinking. And a year in and on 17.5mg I’d not have thought you’d be troubled by PMR pains.
Back ache and wobbly legs don’t sound like PMR to me. But many muscles and strains can occur to accompany PMR due to poorly muscles, poor posture, stretched ligaments etc. Any of these might also be attributed to pred.
What about the pains in your legs? When? Where? Type? Stiffness?
Thanks for the reply. My legs are very stiff when I get out of bed or from a chair, as is my back. Legs, mainly calves, after walking or sitting too long. I do think I have poor posture and my gait has changed due to the back pain, so I am sure that doesn't help. I have seen before somewhere that pred could be the cause of it, but wasn't sure. There are so many side effects of the drug so maybe that is the cause of it?
Calves, claudication with exercise? Does the pain appear when walking and fade if you rest?
Hmmmm, what's exercise lol. And yes, it appears when walking and fades on testing.
GCA doesn't "lead to" PMR - although PMR can progress to GCA. PMR can be a symptom of GCA, it depends which arteries are affected. So, yes, as you reduce the pred dose you could find PMR-type symptoms appearing such as stiffness and bursitis but to be honest I would be surprised if that happened at the sort of dose you are still on which is a typical starting dose for PMR but everything is possible!
Breathlessness can be a side effect of pred - patients are often sent for cardiac assessment only to find it is the pred. The muscle problems you describe could also be due to pred, it can cause muscle wasting - but you would notice that in the fit of trousers (if you wear them). I did, my thighs lost a lot of bulk.
But what you describe sounds very like possibly myofasical pain syndrome or piriformis syndrome - basically tight back muscles because they are inflamed or you are putting stress on them in the way you stand or walk. Again, at higher doses it is often masked but appears as the dose is lowered. I don't think a stick would help - it could well make it worse. What MIGHT help is a rollator - you walk much more evenly using one.
You say the pain is in your calf - one or both? It comes on after walking - after how far and does it go away when you stop? Only to start again when you walk again?
Both calves, can walk around 200 metres then rest for a few minutes and then start again. I have an appointment for a Doppler scan in April just in case it's blocked arteries in my legs. Don't fancy a rollator, it would have to be a last resort. I wear trousers all the time, but, as I have no waist and a big tummy, all of them are pretty loose, so I wouldn't notice lol. The pain does start again as soon as I have done a bit more walking.
I was about to suggest you asked for a doppler scan - doesn't have to be your legs that have the blockage, especially if it is both legs as that suggests the blockage could be higher up.
Lots of advantages to rollators and they are very popular here where I live: you walk more naturally and at a decent speed judging by the ladies in the village, you can manage your shopping well and you always have somewhere to sit! And that last point allows you to get out a lot more!
I started having a pain in my back around Christmas. Just on the right side when I walk or stand for a long time. So far I am just ignoring it.
I had GCA first then 18 months or so later PMR. Symptoms tell you there's a change - totally different to GCA. Mention it to your rheumie when you go. My rheumie used to watch me try to get up from the chair and the next review letter I was copied into had PMR added, he never said anything to me at the time. It's now getting less active - I'm in my 5th year.
Your GP isn't wrong saying being on pred will treat it - I presume you're still on a relatively high dose which will cover the PMR - PMR alone is usually treat with around15mg pred. Keep a diary of your symptoms and always take it with you to consultations.
Have you mentioned the breathlessness to your GP, that sounds like a separate issue to get checked.
6 weeks prior to diagnosis of GCA I had 3 days where I couldn't get out of bed, hips were so painful and rigid stiffness - had to roll out of bed as couldn't get out any other way and the pain was excruciating - it eased after a few hours. After 3 days it all disappeared. When I mentioned it after GCA diagnosis it was thought that was the start of it all but no mention of PMR. Some have PMR and don't know they have it, put it down to rheumatics, as my dear grandmother used to say.
Hi Telian, thanks for this. I am on 17.5mgs Pred, and stuck there since last November. Seeing ophthalmologist on 2nd April. Not got a rheumatologist yet, I am waiting for an appointment, really long waiting list apparently. I do keep notes in my diary and phone of all my symptoms to tell the relevant people. Thanks for the advice though.
No Telian, it’s screwmatics. That’s what my mother called it !
Our family terminology was merely "Screws..."
Hi, on that dose you will be covered, if you do have PMR. Where do you live?
Huddersfield West Yorkshire
Where are you now? What's made decide to move?
We're in Sunny Essex, moved here 31 years ago - hubbies work brought us here. We're going back due to ill health - I'm 'not bad' but help would be good as I care for hubby and he isn't getting any better + while we're able to enjoy the move of course! Our eldest boy and family live there and my brothers and sisters too - plus we have friends that we've kept in touch with since we moved. Will be sad to leave the area and particularly our lovely house that we've lovingly restored over the years, but needs must and I'm mentally prepared now.
Sorry to hear about your hubby. We have a similar problem that I try to look after him and he tries to look after me! Good luck with the move. We came back to be nearer to all our family, but we actually see less of them now than we did when we lived in Scarborough! And, since I became ill with GCA, the seem to avoid me like the plague! "Oh, but you look so well, are they sure you are poorly? You don't look ill, but you ARE gaining weight and your face is getting fat, you should go on a diet!" I could go on, but, hey, each to their own. We are happy here and that's all that matters, although I did downsize from a 2 bed bungalow to a 3 bed terrace!! (Before I was diagnosed). Take care xx
I've had GCA/PMR for 5 years with BC in between and now query MS - which is in the family but as I'm 'presenting very well' even though brain scans, lumbar puncture and eye-evoke tests confirm it, it's deemed either inactive or still under the query radar - I don't mind if it wants to hide!
Initially my family didn't understand but they could see how ill I was in the beginning and have come to understand it. It's my son (and hubby) who've been pestering for us to move back - we are a close family and will live approx 800 yards from him! I'm lucky I get on well with my DIL's and they are very helpful - except one lives in Oz! I think hubby will be exhausted with visitors! We're moving to a detached 4 bed bungalow from a very large 1930s 3/4 bed semi.
I'm sorry you don't see as much of the family as you should but if they don't understand then you don't need to listen to them, that's my philosophy! xxx
What is GCA?
I had similar symptoms and was misdiagnosed with RA. If your pain is not in your joints, especially your legs, You may want to make sure that your GP checks the pulse in your feet to start. I struggled getting out of bed in the morning until my legs could catch up and then, even to walk to the mailbox, I had to stop and rest. Every time I did, the ache subsided. It was go, rest, go ,rest until I listened to my instincts and realized this was not right.
Here is my story. I was diagnosed with PMR back in July of 2017. Prednisone took care of my symptoms. During the late part of of September of the same year, I started to experience what you are describing. I DO NOT want to upset you, but I feel that I should share my experience. It took them until December to realize what was goin on.
I too, blamed what I was feeling on my gait, as I had foot surgery in May 2017. Well, what it ended up being was blood clots in both of my legs. The radiologist could not believe what she saw. I am a 55 year old female that weighed 120 lbs (before pred), and exercised 5 day a week. When they rolled me into the operating room, the surgeon and his staff were just as surprised. I have stents in both legs and struggled with how and why did this happen to someone that does not fit the mold.
Then came late summer of 2018. I made an appointment with my doctor with symptoms of GCA minus the headache. Although at this point I had never heard of GCA and did not know that this is what I had. Sed rate 120, CRP rate sky high, my platelets over a million! Again, they took a look at me and sent me to a rheumatologist and an oncologist. After several visits to the ER and multiple visits to various doctors, they sent me to Mayo Clinic. I was diagnosed in November of 2018 with GCA. My point with all of this information, is now they believe those blood clots occurred because of GCA.
This is my experience. I was overlooked for not fitting the "mold" of what they usually saw. I listened to my body and I am thankful that I did. Again, I absolutely do not want to cause you any upset. It takes your GP to check your pulses in your feet to assess that you may have something else going on that may stem from your GCA.
I know I could have just said, "Hey JanboC, have your doc check your pulses in your feet", and left it at that. Unfortunately, I sometimes share too much, but I so wished that I would have had someone back then to maybe get me thinking of other possibilities.
Best of luck to you, and please keep us posted on your situation.