Leg muscle pain / weakness

[Alwynk]

Hi diagnosed GCA 30 months ago. On 3rd attempt at reducing. Am down to 3mgs but lower l go the worse my lower leg pain and weakness gets. Can only hobble now with a walking stick. CRP test is 7, no sign of PMR Anyone else had this prob please??

[DorsetLady PMRGCAuk volunteer]

Legs aren’t usually involved with GCA, .., but it could be PMR - even though you say no sign. How do you know? If going by CRP that’s not necessarily correct. Is is both legs- or just one?

Maybe the higher dose of Pred were masking some other issue... or maybe you’ve gone to low - to get to 3mg within 30 months for GCA is quick.

You could try 5mg for a few days to see if PMR related - or a few days of painkillers.

If it resolves with painkillers it’s not PMR and needs further investigation. If they make no difference, it could well be too low a dose of Pred

Can you put a bit more info on your profile please - that helps us to answer - start dose, tapering regime, country etc

[Alwynk in reply to DorsetLady]

Hi. Starting dose 40mg. Started to reduce after 6 months as results were excellent . Have b/t every month , GP very pleased at CRP of 7. He has examined my Left leg ( the main problem one) agrees it is muscular and due to me reducing Pred and definitely not PMR as it would have shown up on the full b/t l have regularly. I am reducing at half a mg per month and GP seems to think that things will not improve until l am off Pred altogether. Main prob is trying to stand up, no strength and weakness and pain walking and going upstairs. Trying to walk a bit each day but it hurts! Within an hour of taking meds each day the pain kicks in and and only subsides late evening. Hope that helps .

[DorsetLady PMRGCAuk volunteer in reply to Alwynk]

Sorry but can you clarify a few things -

You were on 40mg for 6 months?

Do you have PMR and GCA or just GCA?

If only GCA then leg is not usually affected

Have you done anything to your leg to cause the issue? However minor And are you saying you think the Pred brings in the pain?

Just seen your reply to PMRPro- which seems to contradict what you said to me -

‘Your comment - “The leg pain is better on higher dose.”

Headaches, jaw etc are classic symptoms of GCA relapse.

And very often blood tests lack behind symptoms so they are not the be all and end all - symptoms, symptoms, symptoms every time!

I don’t think your Rheumy really knows - personal opinion would be too low a dose.

[Alwynk in reply to DorsetLady]

Thank you very much for all your advice, sorry if things sound a bit confused but since this GCA thing started l have been struggling with meds on my own. Until l rang PMRGCAUK l had no idea about Rheumatologists. It was never mentioned to me that l could get all this help, my GP seems to think that he can look after me on his own. To be honest l dont think he has much idea about Pred and all its side effects, and when l told him about you all having Rheumy’s he said that in York all GPs look after their patients on there own. So for nearly 30 months l’ ve been struggling alone. Re this leg pain he just said it was muscle weakness due to Preds and the sooner l got off them the better. I am pretty much self medicating now cos he says that only know how l feel so to reduce when l feel fit enough. I still have a monthly blood test and a short telephone appointment so l am being checked up on a regular basis but ..............

[PMRpro Ambassador in reply to Alwynk]

Not if they have GCA or any suspicion of it they don't - GPs are totally out of their depth there. And if he thinks you need to get off pred asap - he hasn't a clue.

[DorsetLady PMRGCAuk volunteer in reply to Alwynk]

GPs can manage PMR, but GCA really needs a Rheumy’s input - certainly at beginning.

As PMRpro suggests maybe ask for referral to check leg issues, and perhaps whilst you’re waiting up your Pred by a mg or two.

Might also help to have a read of this -

healthunlocked.com/pmrgcauk...

[Yellowbluebell in reply to DorsetLady]

God why are these doctors still oblivious to the affects of gca and assume they can manage it on their own. How many people are they going to harm before they wake up to the fact theyvare not the infallible. YBB

[diduck in reply to Alwynk]

I have been told pmr cannot be diagnosed by blood test x

[PMRpro Ambassador in reply to diduck]

It can't definitively no - but the monthly blood tests will be to monitor the blood markers for inflammation, ESR and CRP.

[Noosat in reply to diduck]

One of the indicators for my GP believing it could be PMR was the high Sed. rate in my blood analysis.

[PMRpro Ambassador]

The leg pain - does it just happen when walking? Why do you say it isn't PMR?

If you were better at a higher dose that is a sure sign you have reduced too far - especially since you say you are on your 3rd attempt at reducing. How far did you get before and what dose did you go back to?

[Alwynk in reply to PMRpro]

Hi , pain only there when weight bearing, standing up is excruciating and walking upstairs. Ok when sitting still and only a few niggles at night, Re 3rd attempt at reducing, l get headaches, jaw ache and general feeling lousy at 2 and a half mgs. Just like when l was first diagnosed with GCA so my GP puts me back upto 5 (even tho nothing shows up on blood test) The leg pain is then much improved but as l come back down again so the pains get worse and worse. GP doesn’t think it’s PMR l presume because the pain is in the lower leg and not in shoulders, arms etc

[PMRpro Ambassador in reply to Alwynk]

I think it might be worth asking for a referral to the vascular unit for an assessment of arterial blood flow in your legs. It is the GCA/LVV (large vessel vasculitis) symptoms that are appearing at the lower doses.

And it would probably pay to stop trying to force the reductions - it rarely works and in the long run ends up making it more difficult to reduce when you get into this yoyo pattern. The blood markers can lag a long way behind the symptoms.

[HeronNS in reply to Alwynk]

Your inflammation level is low because the pred has been doing its job. Sounds to me like you have active PMR. It's possible to have pred withdrawal symptoms which are just like PMR. But if it were pred withdrawal you would expect it to go away in a few days as your body adapts. This effect can be reduced by using a very slow taper plan. However, if the pain persists, and especially if appears to worsen no matter what the blood test says, you most likely are suffering a PMR symptom.

I have not found that physio helps PMR (more about that at the end of this post) although it helps with "add-ons" which sometimes accompany PMR. Your symptoms sound suspiciously like PMR.

I always find I'm fine when sitting still. If I begin to have difficulty standing and taking those first few steps, there's no getting around it, it's the PMR. And having to haul yourself up steps pretty much confirms it. You may not need a much higher dose to keep it under control but there's no point struggling.

Recently I was at zero for a month. Three weeks into that month I began to have what I initially dismissed as over-exercise pain. After a few days it dawned on me (gosh I can be thick sometimes!) this is exactly what my first experience of PMR was like - the stiffness and pain of over-exercising, only it doesn't go away in a day or two. I took 5 mg pred (miracle cure!). Second and third days I took 4, fourth and fifth days 3, sixth and seventh 2. Today I took 1.5. I will see how it goes as I was okay at a very low level before tapering off completely. I'd say it would be well worth your trying a week or so at a slightly higher level. If you need more pred you'll know very quickly. Once the symptoms are controlled again you can drop down quickly, but stop a bit higher than where your pain started to recur. Incidentally, I was at between 2-2.5 for a couple of years and then it took me a whole year to taper down to my (ultimately unsuccessful) zero. It looks like for me there is for the time being a lowest best dose I must take, I still need pred. And that is what we are all aiming for - our lowest best dose. That will be different for each individual and depends on many factors.

Now, pred can cause muscle weakening so, if you can, get yourself onto a very gentle exercise program. A good physiotherapist can give you exercises which will not strain your pred/PMR-weakened muscles but will help you begin to regain your strength. And I'm sure there have been lots of posts here about exercise which helps PMR. Nothing too strenuous or too repetitive.

[Alwynk in reply to HeronNS]

Thank you. That makes so much sense. Think l’ll make a copy of this and show it to my GP. Thanks again

[HeronNS in reply to Alwynk]

It is just the experience of one fellow patient, but your symptom description sounded rather familiar to me!

[Skysey in reply to Alwynk]

I have GCA and am tapering to 10 mgs from this week. I am also on Methotrexate a steroid sparing drug. I have had pain in my left hip on and off for some time but I now have it in both hips and it can occur at the base of my spine. I also have aches in my left shoulder which they think is bursitis. I told my rheumatologist about it and he asked me a number of questions such as are my hips and joints stiff when I wake up in the morning. I don’t particularly have stiffness but have suffered stiffness in the past. I wondered if he was trying to rule out PMR. He feels that I may have osteo arthritis and I have been referred to a physio for assessment. Maybe you need an assessment too? I am really surprised that you are not under the care of a rheumatologist with GCA.

Your leg pain appears to worsen as you taper so it could be that you need to remain on 5 mgs for longer.

Let us know how things go.

[Noosat in reply to Alwynk]

I think the pain can be in various places. Mine was unbearable in the quadriceps, my front thigh in both legs

[Alwynk in reply to Noosat]

Hi Noosat. My pain is in lower legs shooting pain either side of shins and my legs keep giving way so l need a stick or 2 for safety., especially coming down stairs . Anyway as a direct result of all your helpful tips l have made an appointment today to see my GP face to face ( with masks,!) instead of the usual telephone appointment. So fingers crossed l will get something done at long last .😊 Thank you very much

[PMRpro Ambassador in reply to Alwynk]

That could be shin splints - from the inflammation of the muscles, tendons, and bone tissue around your shin. It can be seen in PMR.

[Celebrant]

I have PMR , am down to 2 mg and hurting like no tomorrow.

[Thelmarina in reply to Celebrant]

Perhaps follow the advice here and up the dosage to 5mg for a few days and if that helps then try 4mg etc, stopping if pain resumes. There is no point in unnecessary pain imho. 🌺

[DorsetLady PMRGCAuk volunteer in reply to Celebrant]

Well in that scenario it sounds as if you have gone below the level you actually need.

Quick look at your profile and posts , there seems to be a query whether you have PMR or RA or is that resolved now?

If PMR, and you are down to 2mg (not sure with or without MTX) - then perhaps you should try a higher dose - although you don’t seem to have ever had your illness properly under control.

[Hidden]

Hi I am new to this so my comment may not be entirely on point I have a diagnosis of PMR being taking PRED for 3 weeks I do not have GCA as far as I know. However I relate to the symptom of lower leg pain I take 15mg of PRED daily this appears to have harnessed the inflamation my quads and arms are totally pain free I have sharp pains down my shins the intensity increases if I over excert myself I am currently using PARACETAMOL as required to ease the pain . Therefore I wonder if you have PMR I cannot think GCA is the cause of leg pain good luck Bill hill

[Melodyvine]

You have some very helpful replies here. I did not have GCA only PMR but I did experience the leg pains/sensations when reducing. I would describe them as a ‘unique’ pain.....legs weak and jelly like especially when I’d driven somewhere and started to walk, or got up after sitting/ lying.... my legs felt sort of bandy as though I’d just got off a horse ( not sure whether or not I looked odd when walking). Although a few years ago I so clearly remember that sensation, I’d never experienced it before or since.

However I’ve always understood that a PMR pain was Bilateral?

[Kendrew in reply to Melodyvine]

Hi Melodyvine. I can relate to your comment. I too have had regular leg pain on reduction of pred. Mine tends to come on 3-4wks into reduction and last a couple of weeks before dissipating. I'm down to 2.5mg and have been suffering muscle and joint pains in arms too. My rheumatologist monitors me and so far it's always been due to withdrawal.

Other things come in to play with me too as I'm on statins for high cholesterol, and many people on these drugs report muscle pain as a side effect, although rheumatologist are not keen to support this.

[Telian in reply to Kendrew]

Just commenting on the cholesterol drug, my son gets muscle pain since starting it. It has much improved but still

lurks he says.

[Gunflash]

Hi Alwynk, I have had PMR for a short time (nearly 3 months) I had very stiff joints in all 4 limbs when I first went to the doctor. I could not bend down or lift my arms above my head. Started on 15mg and after the first night of taking the drug I felt like a 2 year old, free of any pain or movement. I then went onto taking the drug full dosage every morning as directed. No tiredness, nothing. Have reduced now in two reductions of 2.5 to 12.5 and then to 10 on doctors instructions of 3 weeks between each reduction. Now told to reduce only 1mg every 6 weeks. So currently on 10mg, two weeks ago I started to be woken up every morning at 5am with cramps in the bottom of the calf muscle of both legs, it was painful and something I had not experienced since playing football 50 years ago.

On advice from this site I firstly tried drinking a full glass of water before going to bed and this helped, less pain but it still woke me up. On suggested idea from PMRpro whose advice along with the other moderators I value immensely, I split my dose and took 5mg at night and 5mg in the morning. This almost took all the pain away and in the last week I have had a couple of nights of quality sleep through to 6.30am. Today I went back to the full 10mg in the morning to see what will happen. I will let you know if interested.

Hope things go well for you, Gunflash.

[Lanakay]

I was diagnosed nearly 3 years ago. I’m finally below 5mg. A month or so ago I was also diagnosed with degenerative disc disease and I have a herniated disc in my lower back. I have had epidurals for the cervical and for the lower back. My legs are feeling very achey and strange from time to time. I was thinking it was the disc disease because it is one of the symptoms. I’ve been going to physical therapy and have been doing the exercises daily at home. I think it helps. Yesterday I was able to do my own toenails instead of going for a mani/pedi. They never cut them short enough to suit me. I tried to go to 2 1/2 mg and was feeling generally awful so have gone to 4. It wasn’t so much the pain but the strange sensations, kind of like a bad panic attack. It still hurts to get up after sitting very long, I won’t say I’m totally pain free. I’ve mever been 73 before so I don’t know how I’m supposed to feel. I also have been prescribed gabapentin, 400mg am and pm. I just keep trying!!!

[PMRpro Ambassador in reply to Lanakay]

You mean you tried to go from 5 to 2.5? By now you should be looking at 1/2mg steps down. Or a very very slow taper with 1mg. No step down should be more than 10% of the current dose!!! Not 50% ...

[Lanakay]

Thank you, PMRpro. I really know now not to get cocky just because it’s a low done 1/2mg at a time for me. Should I stay at each dose about 4 weeks or so before lowering by another 1/2?

[PMRpro Ambassador in reply to Lanakay]

I'd say "at least" - but you can tell better than anyone else how it is going.

[Lanakay in reply to PMRpro]

Thank you. I have seen 2 primary care doctors, 2 rheumatologists and a physiatrist. I’ve had numerous X-rays and 2 MRIs. I get better information here than I have gotten from any of them. I going to stick with 4 mg prednisone for awhile. The injection helped with my neck but not my back. It made my nearly

incontinent for about 24 hours, I couldn’t sleep. After that my legs from my thighs to my ankles king of burned and ached. I don’t think i want any more injections. I am still doing my exercises from physical therapy. I have an appointment with a rheumatologist August 17th. I’m not sure I’ll go back to the physiatrist at all. It’s hard to know what to do next. Maybe a spine dr?

[PMRpro Ambassador in reply to Lanakay]

Sounds as good a readon as any not to have another!!!