Severe pain for 5 months: Is it normal to have... - PMRGCAuk

PMRGCAuk

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Severe pain for 5 months

librarylulu24
librarylulu24

Is it normal to have continuous severe pain with PMR? I've had severe pain since Sept. 2019. Sometimes I have a few good days when the pain is more bearable but mostly I am stuck in the house, unable to do anything. 7 years ago, I became disabled from vertebrae fractures caused by Prednisone I took for a Crohn's Disease flare. I'm worried about taking the Prednisone but the pain from the PMR is so much worse than anything I've experienced before. My rheumatologist is of no help, she keeps trying to get me to stop the Prednisone.

24 Replies
PMRpro
PMRproAmbassador

What SORT of pain? And where? And what dose are you on?

Pred is the go-to for PMR and the only thing that will provide reliable pain relief - but even so, it will only work when you are on an adequate dose. You either take enough or you might as well not bother at all. However - if you have more vertebral fractures they will cause pain that pred won't relieve. Has that been checked out?

librarylulu24
librarylulu24 in reply to PMRpro

It is a burning pain, feelslike a severe sunburn but goes deep into my body. Mostly in shoulder blades and ribcage. It is very different from the pain from my fractures. Much more severe. I do have new fractures low in my spine but I don't believe this pain is caused by the fractures. I take prescription pain meds to deal with the back pain. If I reduce the Prednisone below 10mgs, I'm in so much pain I can't get out of bed, so I know it is helping somewhat.

PMRpro
PMRproAmbassador in reply to librarylulu24

I would say that is not really typical of PMR pain - but shoulders and rib pain could be due to myofascial pain syndrome and that will also respond to some extent to the pred.

librarylulu24
librarylulu24 in reply to PMRpro

Thank you for the information. I'm not very familiar with myofascial pain syndrome so I will investigate that possibility. I'm going to see another rheumatologist for a second opinion

Is the Rheumatologist the one you have seen over the years for your other Health issues?

Having more than one Chronic Condition at once can cause other Pain related Symptoms or Side effects and does require for you to get a more individual Pain Management Treatment , including Prednisone , but would also require you to make changes to the doses of other drugs you take it you have Crohn's , and possibly cause the need for Nerve Specific Pain Drug increases for your Bone related issues.

If the Rheumatologists only thought is to get you off Prednisone or on lower doses because you are vulnerable to injury or other problems from long term steroid use , haven't they made other suggestions of Steroid Sparers , or other Treatments , that can help you reduce it quicker while still controlling your pain?

What medications and treatments do you get for Crohn's now , or your other conditions , if you don't mind me asking?

Have they suggested any other drug options to you , not just for PMR , but to help all the Pain issues you have ?

Have they suggested that the Pain is being caused by something else ?

If you don't feel you are confident in the treatment and general information and support you are getting , I wouldn't be from what you have written so far , I would suggest requesting another appointment or a second opinion with a Rheumatologist that understands all the Conditions you suffer from.

You may also benefit from requesting a referral via the GP back to the Specialist whom dealt with your Bone issues , and to a Pain Management Clinic.

Even if you remain on Steroid Treatment they will advise you on steps you can take to avoid further complications in all of your conditions , possibly offer other pain relief , both drug and therapy based , and possibly help link you to Departments to receive Orthopaedic and Occupational Support that will make your Health needs less Disabling for you on a Daily Basis.

Take care , good luck and let us know what happens.

Thank you for your thoughtful reply. I've been seeing a pain management doctor for 7 years to manage the pain from my vertebrae fractures. I live in the US and due to the Opiod epidemic, everyone on pain meds has had their dosages cut very low. My dose was lowered 2 years ago, resulting in greater back pain on a daily basis.

In addition to opiods, I takeTizanidine (muscle relaxer), Sertaline (antidepressant) and Trazodone to help me sleep. I am on Humira for my Crohn's Disease which I've had for 31 years. My Crohn's is in remission. I also take Gapapentin 4 times daily for nerve pain. I am on Social Security Disability due to Intractable Pain. When I first became disabled, I tried a few different drugs thatprevent bone loss but had allergic/ bad reactions to each.

I have been to a number of orthopedists about my back. I was told my fractured vertebrae were like dust and physical therapy and aqua therapy would cause more damage. I'm not a candidate for any type of back surgery.

When this pain started I was placed on 20 mg of Prednisone and the pain disappeared overnight but only for a few days before it came back. I was tested for Lupus, RA and Lyme Disease then diagnosed with PMR. I stayed on the 20 mg of Prednisone for 1 month but the severe pain continued. My rheumatologist, concerned about my bones, had me reduce my steroids to 10 mg which I now realize was too quick. I went up to 15 mg with some relief but was told I couldn't stay on this amount. Every time I try to reduce, the pain increases. Now I'm being told the pain is just part of PMR

I know I should have seeked a second opinion sooner but mentally I've had a hard time dealing with this situation. I do have some relatively good days but they are few and far between. I'm so grateful for this forum. Thank you again for your reply.

I can totally understand the Mental Stress of it all. I am still trying to hobble through the Gamet of getting the medication which will be right for me , but need a Genetic Confirmation to get the possibility of using a Biologic Therapy in my region.

The struggle to keep fighting and get your Energy up to a level so that you can cope with the Secretary Phone Calls , New Appointments , and getting a handle on how to approach each new Doctor then how to ask the right questions to get the most practical advice is unbelievably tiring and torturous.

I'm always saying on the forum , " There is nothing that makes you feel more sick than trying to get well."

I wonder whether you have used a Steroid Sparer in the past , or if you had problems with Methotrexate , Azathioprine or others . If not discussing these options at an appointment with your current Rheumatologist might help.

Otherwise , you are already on Humira , but I know another Forum Member was swapped to it for Uvietis but it didn't help the PMR and they returned to using Actemra with better results.

I don't know wether Actemra also helps Crohn's. If it does , it might be worth discussing with your Crohn's , Bone and Rheumatology Specialists where to go next with your Combined Treatment choices.

There may be another Biologic Therapy that can help both conditions that we haven't heard about in the UK but is in use in the US. From some of my reading, I know there is a wider availability of options being used , and some illnesses are being treated with Biologic Combinations .

It's early days for many of these treatments though , so you may find your local team need to consult with Specialists in the field at other Hospitals in order to help create a Plan that fits your individual and complex needs.

But that's what they are there for , and they are meant to enjoy a Challenge.

Whatever the case , your whole team of Doctors need to start Communicating and work on a whole body solution .

Keep updating us , or just posting if you need to talk.

Hopefully our words of support can keep you going during this trying time.

The one positive is you have been through so much already and survived it , so you definitely have the skills and guts to get through again. I think your pretty amazing anyway.

Take care , PM me if you like , I have everything crossed for you xxx

I feel like I've been thrown a life line. Thank you for the empowering words.

So far, the doctors haven't wanted to add Methotrexate because of the Humira and the fact that I'm allergic to most antibiotics. If I get an infection, it can turn into a big problem.

I hadn't thought of trying a different biologic but I will definitely discuss this with my docs.

In the US, biologics are very expensive. My Humira is about $3,000 a month but I get it for free because I'm on disability and my income is low. A lot of insurance companies won't pay for biologics at all, so cost is a factor, too.

I have yet to find specialists who want to work as a whole to treat me. I've heard this is a problem for many others around here.

I think the biggest obstacle is the fact that patient's pain is not taken seriously. In the US, patients in pain are regarded as drug seeking addicts by many doctors /hospitals. It's difficult to fight this stereotype.

Keeping you in my thoughts 😊

PMRpro
PMRproAmbassador in reply to librarylulu24

Humira is an anti-TNF drug - which are specifically warned against for PMR as the risks far outweigh any benefits. One of the IL-6 antagonists would be a better option - Actemra has been trialed for GCA and approved so will also work for most PMR but there are others available.

It's definitely the Biologic route then from the sound of things , plus it could end up being more cost effective in the long run for them if a Biologic Therapy can be used that treats both conditions at once.

Like you were getting a deal from the Supermarket , " Manage one illness , get another treated free!"😋😁😂😂

I really don't think you have to worry about them not taking your needs seriously , your medical records speak for themselves , you are an urgent case in genuine need not a Drug Addict.

It might help to do a little research before speaking to the Doctor's themselves.

Getting on the internet and doing searches under , Biologic Therapy and Crohn's,

Biological Therapy for PMR/ GCA , look under each disease and even read up on the Combos which I have seen discussed I think in relation to certain Cancer and Immunity treatments.

You may be lucky , get a Eureka moment with a list of choices that are being trialled , then , maybe approach your Crohn's Specialist first as they are already treating you with a Biologic Therapy , it may be easier to make a switch to a new type via them as the funding and approval is already in place.

If you want to chat about it more at any point just send me a Private Message , I'd be really interested to see how things go.

Take care , glad I could cheer you up a bit xxx

Your situation is similar to mine. I also can't go off pred, or even lower it from25 without pain. I also had two fractures in my lower back and also have inflammatory arthrtis. Yet my pain is all over, shoulders, hips, legs, and neck especially. I was put in a pain clinic and take pain pills as well, and I have had shots in my back. I'm to have an ablation in the coming weeks, and I am also set up to start a biologic infusion of Actemra for the arthrtis and maybe the PMR, too, that is suppsed to help me cut down on the pred. I go around in terrible pain, so I have to try something new.

P.S. I also have rib pain and when they took an xray, they found I had small fractures in my ribs. Nothing to do about it. Probably caused by the prednisone.

Our situations are so similar. I totally understand the all over pain. The biologic is a good idea, it helped my Crohn's Disease tremendously, it should give you some relief from the inflammatory arthritis and hopefully help with the PMR. I hope the ablation brings you some relief

PMRpro
PMRproAmbassador in reply to librarylulu24

A biologic will only help if it is specific to the malfunctioning bit of your immune system that is the underlying cause of YOUR inflammation - biologics only work on one particular pathway and don't work on others. Just because it worked for one person doesn't mean it will work for another.

Hidden
Hidden

Welcome to the club.

Crohn's is part of a spectrum of about 7 inflammatory diseases. All seven have overlapping characteristics. so it just depends where you fall on the spectrum. Most of the diseases are inflammatory arthritis of one kind or another with Crohn's and uveitis tossed in for good measure.

enthesis.info/pathology/spo...

There is really no need for PMR to be dumped on top because the spondyloarthropathies cause more than enough pain. I just called it all a big, painful, inflammatory mess. I don't think there is any good solution. I don't like to talk about the past.

Currently, Actemra seems to help me after 30 years of taking prednisone. It might help you if your Crohn's is in remission and PMR is causing most of the problem. If that isn't the case then Humira might be better. Taking a biologic will limit the amount of prednisone you can take. You can't take 2 biologics.

I can't honestly say prednisone doesn't have serious side effects so I don't encourage anyone to take as much as I have and certainly not for as long as I have. Especially someone with Crohn's.

I don't have any solution. Even if there is something that controls pain the goal is to limit the damage the inflammation is causing. For spondyloarthropathies, biologics (TNF inhibitors are preferred) have been shown to be better than prednisone at preventing damage. I have plenty of inflammatory damage to my spine and elsewhere. That causes pain too.

Actemra costs roughly half what Humira costs so its a relative bargain.

Thanks for that link, I'm going to discuss it with my gastroenterologist . Crohn's Disease runs in my family, so it's definitely worth investigating.

You're right, it is a big inflammatory mess. I've been on Prednisone for months yet my inflammatory markers have not dropped significantly . I'm glad the Actemra is helping you.The only biologics my gastroenterologist offered were Humira and Cimzia. I'd never heard of Actemra until this site so I googled it and I see it's prescribed for juvenile arthritis. That presents a problem because my insurance won't pay for a drug that's used "off label" , but maybe they will if my doctor can make a case for it.

Hidden
Hidden in reply to librarylulu24

Actemra was used to treat rheumatoid arthritis (RA) many years ago. My guess is that it wasn't that effective because it blocked the wrong inflammation pathway. Actemra is an IL-6 blocker as compared to a TNF-inhibitor.

I'm not sure what happened to Actemra in the interim but recent studies have shown that it works well for GCA and probably for PMR. It is only approved in the United States to treat GCA. However, more and more doctors are using it "off label" for PMR.

PMR /GCA are forms of vasculitis and tend to go together similar to how spondyloarthropathies are lumped together. My personal belief is that the two inflammatory worlds more or less collide and become a hybrid of both kinds of inflammation. I don't know that for a fact so someone may disagree. However, PMR/GCA are totally different from the spondyloarthropathies.

I have been diagnosed with reactive arthritis/uveitis and later on with PMR but not GCA. Within the past 13 months, I have been given Actemra for PMR and got entirely off prednisone in 5 months. No small feat because I have taken prednisone for 30 years or more.

Then my uveitis flared up so back on 60mg prednisone and Actemra was stopped.

Then, I was introduced to Humira for uveitis as I tapered the prednisone back down.

Then, Humira didn't work so well for PMR so Humira was stopped and Actemra was restarted.

Now, I probably could taper off the prednisone again. However, there is concern about my adrenal function. My current instructions are to stay on 3mg prednisone to prevent uveitis and to give my adrenals more time to recover.

I have no clue what will happen next.

librarylulu24
librarylulu24 in reply to Hidden

How disappointing for you go back on Prednisone again. It's two steps forward, one step back isn't it? I just reviewed the information on Actemra and I don't believe I'm a candidate because I have diverticulosis. My gastroenterologist just called and he is willing to discontinue the Humira and will prescribe Cimzia. I also spoke to my rheumatologist and her preference is Cimzia with Methotrexate being added if necessary. My previous insurance didn't cover either med so I very happy I have the new one.

Keeping my fingers crossed we will get some relief in the months ahead.

PMRpro
PMRproAmbassador in reply to librarylulu24

Cimzia is very unlikely to help in PMR - it is a TNF-alpha inhibitor and that is rarely implicated in PMR. The 2015 Recommendations advise against the use of this group of drugs in the context of PMR as they are ineffective and only expose patients to unnecessary risks.

librarylulu24
librarylulu24 in reply to PMRpro

Cimzia worked much better than Humira for my joint pain from my Crohn's so I'm switching for that reason alone now that I can pay for it. I think the jury is still out on Methotrexate for PMR but I would be willing to try it. I'm also open to a new diagnosis. I see my rheumatologist on the 19th.

Hidden
Hidden in reply to librarylulu24

Diverticulosis would definitely be a contraindication for Actemra. Your doctors sound like they know what they are doing. How did they decide that you have PMR on top of everything else?

librarylulu24
librarylulu24 in reply to Hidden

When I began to have severe pain in areas other than my back and I was given the steroids and they helped. Unfortunately, the steroids kind of petered out. I didn't remember until I just recently that my rheumatologist did suggest Methotrexate and Cimzia months ago but my Medicare won't cover them and the companies weren't offering any help for patients with insurance. My memory has gotten so bad since this all started. Luckily, I am on my husband's plan now and both are covered. Anyway, whenever I would talk to my rheumatologist I was told PMR is painful but you need to lower your steroids which made no sense to me. The pain was so great it was hard to even get to the drs so I think I gave up for a while there

Hidden
Hidden in reply to librarylulu24

Yes, that is how it was for me too. I was told to "find a dose" that works. When I came back and said 40-50 mg works I was told that was too much. Then when I got to a lower dose there was severe pain again. It took a long time before I could maintain a dose between 10-15 mg. I was never offered a biologic. I guess that was because I was diagnosed with PMR and prednisone is the only option.

When I turned 65, I didn't exactly change doctors but did change health care systems. I'm on Medicare but I felt the Veterans Administration (VA Hospital) would be better for me because it doesn't cost me anything. They started Actemra on my first visit. I didn't need any insurance approval.

Actemra is used for rheumatoid arthritis in adults too. It has been approved in some jurisdictions for GCA so off-label use for PMR is reasonable. The cost is prohibitive for "just" PMR.

Please be aware that tocilizumab is not a benign medication and like nearly every drug we take has the possibility of serious side effects so cost and risk need to be carefully weighed against potential benefits.

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