Aching shoulders, upper arms and neck: I'm into PMR... - PMRGCAuk

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Aching shoulders, upper arms and neck

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I'm into PMR/GCA and gradual reduction of prednisone, plus methotrexate. Does anyone else have aching in the shoulders, uppers and sometimes neck? Not the PMR stiffness pain. This is more like a dragging, jet-lag pain with occasional shooting pains down my arms or throbbing in lower arms. This happens sporadically, not all the time, and I can't find any specific reason or time for it to happen. Sometimes there's no pain or aches (other than restrictive PMR stiffness pain). My rheumatologist says it is not PMR pain. Anyone else have anything like this?

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I could have written your post, I have exactly the same, it actually feels a bit like carpal tunnel except the shoulder and whole arm is affected. Add to that RA pain and stiffness it’s all a recipe for immobility.

My rheumatologist wants me to tough it out on Actemra, Methotrexate & 5mgs of Prednisone until I see her in January. I know this is not working. PMR has been ruled out because I do get some relief from Ibuprofen and Paracetamol. I feel for you, it’s horrible.

PMRpro
PMRproAmbassador in reply to Laurapc

"PMR has been ruled out because I do get some relief from Ibuprofen and Paracetamol"

I think it is a bit OTT to "rule out" PMR because painkillers help - they do for some people, it is unusual and almost never total relief like you get with pred. And yes, taken with a glass of wine, ibuprofen at least took the edge off for me too.

I'd be looking for a different rheumatologist - because even Actemra doesn't have a 100% success with stopping pred, about half of patients still need enough pred, just enough pred is usually rather less than without. No decent doctor would tell a patient they should tough it out - and I hope one day SHE develops something painful that her doctor isn't helpful about. Combining pred, mtx AND Actemra is totally OTT if you ask me and the mind boggles what it is doing to your immune system. I felt worse taking mtx than I ever did with PMR without pred - and that definitely wasn't acceptable to me.

Laurapc
Laurapc in reply to PMRpro

Well to be fair she didn't actually say that. I only have one option left for the RA, I have run the gauntlet on the biologics. If I give up on Actemra before we are certain it's not working and the last option which is Rituximab also fails, I will have missed the opportunity. Also, because I have been on a Prednisolone rollercoaster she wants to see how I am on 5mgs for a definitive period of time. A lot of it is my fault because I was so desperate to get off the Pred I did it too quickly. There was also a misunderstanding along the way which didn't help. Going back a few months I was doing better on 25mgs of MTX and 10mgs of Pred. Now, I have no idea what's going on. Also, I had a period of time where I was doing really well but as soon as I try dropping down to 2.5mgs that's when the problems start. Obviously I'm not doing that anymore.

PMRpro
PMRproAmbassador in reply to Laurapc

Are you trying to reduce 2.5mg at a time? Too much below 10mg. And frankly - what you need is more pred, never mind the fancy stuff. There is no point taking too little pred - all the problems with no benefits to balance them out.

No doctor can force you and all decisions should be shared. I'd really be looking for another opinion.

Laurapc
Laurapc in reply to PMRpro

My feeling is I definitely need to go up to 10mgs. I have been all over the place between 5 and 20 for a year. I'm sure I will stabilise on 10. I see her in January when she will have MRI results and latest labs so we'll see where we are. If there's nothing else going on I will say that's what I want to do.

PMRpro
PMRproAmbassador in reply to Laurapc

You may not need as much as 10mg - but you definitely need more than 5mg. The trouble with reducing in too big steps is you have no idea where you should be. Even 6mg may be enough - or it may be 9mg - and that is why you need 1mg tablets to be able to reduce in small steps and enough time between each drop to know the new dose is still enough.

Anyone would think it was rocket science...

Laurapc
Laurapc in reply to PMRpro

I did ask about 1mg tabs and never got a response. Cutting tabs in half is ridiculous. I'll put it on the list

powerwalk
powerwalk in reply to PMRpro

"The fancy stuff" - you made me giggle!! No mean feat today let me tell you!!!

Sounds like a manifestation of PMR to me. Once they start adding drugs like Methotrexate to the mix, the symptoms seem hard to read. Whatever your Rheumatologist labels it, it’s unpleasant pain that requires attention. Poor you.

Hi Waterwise. I had very similar pain which was excruciating if I went to pick something up. Ultrasound showed effusion in biceps tendon tear, thickening in the bursa, etc etc. Lots of big words and my doctor said this had nothing to do with my PMR. Unfortunately she said the only pain relief I should have is Panadol Osteo, which is useless. I guess we should all just suffer, maybe with a glass of wine...

Laurapc
Laurapc in reply to marciahiatt

My PM pain relief for quite a long time has been a glass of wine with a couple of paracetamol and Ibuprofen. It does work.

hi Waterwise, a shoulder and everything around is a complicated thing, and before you even take more medicine it does not harm you to go to a fysiotherapist. She might be able to figure it out. I for example had myofascial pain syndrome and with some strong massage the problem is solved. The treatment was not painless, but effective. good luck.

Hi, I thought I had PMR last December, (already have GCA) couldn't lift my left arm at all and the right shoulder was starting to hurt. I had torn the tendons in my left shoulder and was overcompensating with the right. My physio says Pred softens the tendons makes them easier to tear and strain. I am sat here today with one foot on an ice pack because of sore tendons in my foot. I got a scan which showed the tear in my shoulder and physio and exercise fixed it. I get shooting pains sometimes, and neck and shoulder pain but I am writing to a deadline at the moment and spending 9 hours a day at a keyboard. Pilates 3 times a week and a session at home if the pain is getting to me helps me manage on paracetamol.

I get morning pain every time I go below 6 mg's, but am determined to get off the dammed things so trying at 5mg for 6 months this time to take it slow.

P.S. Thanks to whoever recommended doublebase gel for itchy back, working a treat.

Yes! I’m from the U.S. My rheumatologist & GP say the same - it’s not the PMR, it’s steroid withdrawal symptoms. I’m down to 5mg as of this week and have been taking 6 tabs methotrexate weekly. Woke up today with stiff upper arms, sore left wrist, & stiff upper legs. Have lots of fatigue. I just keep telling myself if two doctors are saying the same, that it’s not the pmr, then I feel I must suck it up, and keep going. I’m on a 1mg taper every two weeks. But now that I’m down to 5mg, I may go every three weeks til I see the rheumatologist in January.

PMR2011
PMR2011 in reply to lizg0017

1mg every 2 weeks is a phenomenally fast taper especially since you are below 7mg. I have been reducing by 1/2mg every 4 weeks and I’m on Actemra. Your pain sounds very suspicious for PMR pain. Hope you are able to slow it down and sort it out.

lizg0017
lizg0017 in reply to PMR2011

Agree. 1mg taper every two week is fast for this low of dosage. My next set of labs are due December 20. Rheumatologist appt January 3. I’m going to stay on 5mg til then unless pain gets worse. Thank you.

ptm2018
ptm2018 in reply to lizg0017

In USA too. If it’s from tapering does that mean the steroid is not working and that your dosage should be increased?

Laurapc
Laurapc in reply to ptm2018

My understanding is that steroids only mask the symptoms of a disease and do nothing in terms of improvement. I have taken Medrol packs a number of times to get me over a hump after very painful flares.

ptm2018
ptm2018 in reply to Laurapc

That’s exactly what I was told by my rheum too. And in my family we keep scratching our heads on this one because if it masks the pain and the pain returns that means the sed rate (ESR blood work) can go up and that could mean we would have to start all over again with higher dosages)? This is driving me insane. :(

I also found out after a tremendous amount of research that allergies can play a roll with inflammation. I found out a few weeks ago that my gluten markers were at 48 meaning I am gluten intolerant and glutens have been known to cause havoc in the body starting in the gut. (Leaky Gut). Gluten foods can cause pin holes in the lining of the stomach and the toxins can get through those holes and seap into our blood causing inflammation as does sugar. Bottom line: our docs say pain can return when tapering but it’s lifestyle changes we have to make to hopefully stay away from starting this vicious prednisone cycle again. Your thoughts?

Laurapc
Laurapc in reply to ptm2018

At this rate I doubt I will ever get off it. I have a friend with GCA who can't get off it. I honestly don't know what lifestyle changes I can make. I'm just exhausted. Those of us with chronic immune disease seem to be dependent at some point and then eventually all the time. I'm not well informed on the Gluten aspect. I do have acid reflux which is well controlled so it's not something I need to worry about.

PMRpro
PMRproAmbassador in reply to ptm2018

No - I think you have got the view wrong. The ESR/CRP are nothing but signposts to show there is unmanaged inflammation going on somewhere. The pred mops up that unmanaged inflammation - if it is due to the underlying cause of the symptoms we call PMR - and that in itself is a good thing, unmanaged inflammation causes damage. But both ESR and CRP can be raised due to other things - them being high without PMR symptoms doesn't automatically mean you need more pred.

Cutting gluten may help - but it may equally be that it is cutting the carbs and sugars that reduce the inflammation as they are all very pro-inflammatory. I didn't eat gluten for a long time, it made no difference, But not eating carbs has helped a lot of people - more than cutting gluten - but I can't say it makes a difference to my a/i disorder as I haven't eaten much carbohydrate for years now.

Nor can anyone say "you/I will never get off pred". No-one can predict that - and the median duration of pred management for PMR is just under 6 years so there is a wide range of durations there. What is pretty certain is that for some 95% of patients they are able to get off pred at some point, which is more than happens for most a/i disease. It might be 2 years - or it might be 11, both durations I have seen in real people.

ptm2018
ptm2018 in reply to PMRpro

It’s not just about reducing carbs or sugars. Many of the foods we eat have glutens in them. I read labels on everything. Glutens themselves (not only found in bread) can cause inflammation. Wheat is included in many foods. Also genetically modified fruits and veggies can exacerbate our problem. Also my rheumatologist told me that as we get older ESR rates can go up and down. ESR is a non-Specific blood test. Also the human body can be harboring bacterial infections as well which can elevate ESR and cause pain. The PMR patient is impacted by many underlying issues from what I have been told by doctors. Woman hit the worse. All I know is that for me it takes a very long time for the body to adapt to a gluten free diet and takes a long time for toxins to leave the body. It can take a year. For me I am trying to take the total gluten free and sugar free seriously to also lose weight. In other words I am trying to eat as clean as I possibly can.

PMRpro
PMRproAmbassador in reply to ptm2018

There isn't much you can teach me about reading food labels - I know all about glutens, wheat and where they are found. I lived gluten-free for years - and it made no difference to my PMR at all. No doubt you will tell me the rest of my diet is the cause .

ptm2018
ptm2018 in reply to PMRpro

No I can’t tell you that. I am speaking on behalf of what my own physicians have advised and told me and again the genetic modified foods are full of pesticides and research is showing these bad elements are causing patients to get sick, whether it’s PMR or some other disease. It’s very hard. On Thanksgiving for example I missed eating the stuffing but toughed it out. Regardless for me, I need to stay focus on my gluten free program, eat organic and exercise.

PMRpro
PMRproAmbassador in reply to ptm2018

Luckily I don't live in the USA and GMO food is very unusual here. There are also extremely strict rules about poesticides, Italy is stricter than the EU as a whole. My butcher sources all his meat locally - grown up mountains most of it.

ptm2018
ptm2018 in reply to PMRpro

You are lucky. And when I was in Italy I ate healthier. Here in the USA it’s just awful. And I have to pay significantly more to buy non gmo, organic and gluten free foods. So unfair.

PMRpro
PMRproAmbassador in reply to ptm2018

I think the organic stuff I buy is a bit more expensive - but not as much more as it would be in the UK. I heard/saw somewhere today that Germany eats more organic food than any other country in the EU and Austria produces massive amounts per capita - and Austria is just 30 miles in one direct! Our region also produces a lot of organic things too. I like living here for all sorts of reasons :-)

lizg0017
lizg0017 in reply to PMRpro

Good response. You have touched on some good points.

Meggsy
Meggsy in reply to PMRpro

Have to agree re the carbs and sugars, (other than my daily fruit intake). I cut them out years ago and haven’t gained an ounce since being on Pred. Have had a reasonably smooth descent from 25mg until a bit of a glitch at 9, so back up to 10 where I am quite happy to stay for quite a while, and considering one of the slow reductions am from here on.

lizg0017
lizg0017 in reply to ptm2018

I’ve been wondering if sugar or starch has played a role with my PMR diagnosis. Sadly, I love sugar and am an intermediate baker. So maybe with all our Thanksgiving, high fat, high sugar food, my symptoms worsened. I’m going to ask my rheumatologist what she thinks about me seeing an endocrinologist for additional insight to my PMR situation and recovery.

lizg0017
lizg0017 in reply to ptm2018

It’s possible. Note sure yet. Next set of labs due December 20. If CRP and SED Rate are up, then I’ll know. This isn’t quite like onset PMR symptoms so for now, I’m monitoring my pain insightfully. Thanks

PMRpro
PMRproAmbassador in reply to lizg0017

I really would love to know what makes them think it is steroid withdrawal symptoms - they are talking rubbish. Methotrexate doesn't work for everyone - and it doesn't replace pred, it just might possibly maybe allow you to manage the PMR with a bit less pred. But there are no guarantees. If the symptoms return - you are not on enough pred. No ifs or buts.

Like PMR2011 I mixed up the replies from you and Laurapc - what speed are YOU reducing at?

Prenisone is the only thing that will help PMR! And even after 7 years, I’m still fighting to reduce! It’s only half a mg. at a time too!!

Possibly fibromyalgia?

I was having neck and arm issues on one side. X-ray showed it to be a bulging disc in neck and upper back. I am treated separately with a steroid shot and relief lasts a year. I am currently using ice until my next appt.

I had aches and pains all over sometimes neck , legs, arms, hands wrists, awful fatigue. I could go on.... and then …….when I was taking below 5mg of pred I went to an Endocrinologist to have my adrenal gland function tested and it was OK. I then told him about the symtoms I have mentioned above and he did a Vitamin D test and mine was 11 - should be between 75/125. He gave me 50,000 units of Vitamin D for 6 weeks and gradually my symtoms started to go. I now have to take 20,000 units of vitamin D per week and have my bloods done regularly.

Could it be that your levels are low?

Hi Waterwise couple of years ago I had exactly the same symptoms with tingling in the arm weakness and shooting pains down my arms/neck. Doctors could not find anything it was becoming excruciating. Eventually I was found to have an ulnar nerve compression on my left arm. Had a small operation ulnar nerve decompression and both my carpel tunnels done. Not looked back till this year when diagnosed in Feb 18 with PMR, had a poorly sick dog I helped nurse. One time when I was lifting him I felt something snap in my upper left arm I knew what it was immediately it is was a Popeye muscle where the ligament snaps top and bottom of the bicep muscle and will never really go back was very painful. I think steroids slackened off the ligaments and that is why I have a bulging muscle, so beware if you are lifting anything do it very carefully. Just thought this might be of interest. Take care all. Angie xxx

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Thank you everyone for getting involved with my query. I have a lot to think about. This is the greatest support forum for PMR/GCA sufferers. Thank you all.

Oh you have my sympathy - all these extra pains that are hard to put a name on!! At the moment I have a shocking sharp pain kind of in my collar bone area - like someone turning a knife every few minutes. I'm assuming its PMR related in some way. It doesn't take much to upset the applecart! Hope you find a remedy for what you have. Sometimes these "unknown source" pains burn themselves out. Very best wishes.

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