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Excruciating Shoulder, Lower Back and Thigh Pain (PMR?)

Hello everyone.

I was diagnosed Crohn's/Behcet's for more than 25 years and have taken Enbrel, Humira, Remicade and now Simponi with Methotrexate. My scope last Fall showed scarring (this is the first time scarring had been reported). I had been taking between 1-10 MG of prednisone for the last 20 months.

Three weeks ago, while on 1 MG of prednisone, I suddenly developed crippling fatigue and excruciating pain in my shoulders, lower back and thighs. Blood was drawn and my CRP was elevated. My family doctor made an appointment with a rheumatologist and |I have increased my predniosne to 2 MG. (I am sensitive to prednisone and experience itching when the dose is increased).

I take 100 MG/ML of Simponi every 21 days and 1 ML of methotrexate weekly.In the past, there has been speculation about AS, and now PMR. The shoulder pain is nauseating and I can't imagine how I will cope until I see the rheumatologist.

Does anyone have this type of pain with their IBD?

Thanks for reading.
 
Hello everyone.

I was diagnosed Crohn's/Behcet's for more than 25 years and have taken Enbrel, Humira, Remicade and now Simponi with Methotrexate. My scope last Fall showed scarring (this is the first time scarring had been reported). I had been taking between 1-10 MG of prednisone for the last 20 months.

Three weeks ago, while on 1 MG of prednisone, I suddenly developed crippling fatigue and excruciating pain in my shoulders, lower back and thighs. Blood was drawn and my CRP was elevated. My family doctor made an appointment with a rheumatologist and |I have increased my predniosne to 2 MG. (I am sensitive to prednisone and experience itching when the dose is increased).

I take 100 MG/ML of Simponi every 21 days and 1 ML of methotrexate weekly.In the past, there has been speculation about AS, and now PMR. The shoulder pain is nauseating and I can't imagine how I will cope until I see the rheumatologist.

Does anyone have this type of pain with their IBD?

Thanks for reading.
It's the Prednisone eating away at your joints. I have had both hips replaced and a friend had his shoulder repaired. You can't be on Prednisone that long without long term effects even at low doses
 

Maya142

Moderator
Staff member
It could be AS - AS can cause lower back and thigh pain (referred pain from the SI joints).
Red flags for AS would be morning stiffness and pain that gets better with movement and worse with rest (so for example, sitting through a movie or sleeping at night is often painful).

A rheumatologist will examine your joints and probably order some imaging to determine whether it is AS or some kind of spondyloarthritis. Usually x-rays are done and often MRIs.

Here is some good info about the kinds of arthritis associated with IBD:http://www.crohnscolitisfoundation.org/assets/pdfs/arthritiscomplications.pdf

The medications used for AS would be the same ones you are on - anti-TNFs. If Simponi is not working, you could up the dose (do 100 mg every 2 weeks for example) or try Cimzia.

There is also one IL-17 inhibitor approved for AS - Cosentyx - but it is rarely used if you have IBD or gut issues because it can worsen them.

However, my younger daughter, because she has severe AS and mild Crohn's, is on an IL-17 inhibitor. It does cause gut issues (her Crohn's does flare) but it works much better than anti-TNFs for her AS. And she does have some joint damage (fusing SI joints, hip damage and jaw damage), so we need to get her AS under control before more damage occurs.

Another option would be to add an NSAID. They are also generally not used if you have IBD or gut issues, but if you are in a lot of pain, they may help. My daughter who has IBD and AS is also on an NSAID. Celebrex is often used because it is easiest on the gut. My daughter is also on a PPI with her NSAID to protect her stomach.

Another option you might consider is drug induced Lupus. It can cause severe joint pain and anti-TNFs can cause it. My daughter had it because of Entyvio and she had awful joint pain (in addition to her usual AS pain) and terrible fatigue. It is diagnosed by blood tests (anti-histone antibodies and ANA) and goes away after the drug is stopped (can take up to 6 months though).

Prednisone can cause joint issues if you have been on it long term. Avascular necrosis can occur. It usually occurs in hips but can occur in other joints too. Unfortunately, there is no real treatment except surgery and staying off steroids. X-rays would tell you if you have it.

I don't know much about PMR so can't really comment on that.

I hope you are able to find answers. While you are waiting, we use heat and ice a lot for joint pain (both my daughters and husband have AS). Getting in a pool can also help - gentle exercise and stretching. PT can help. A TENS unit can help - you can have one prescribed or get one online.
 
Hi Maya,

My sincere thanks for your response. In more than 25 years of Crohn's/Behcet's, this is the most vulnerable I have felt and it is comforting to hear from others who have traveled a similar path.

I am waiting for an appointment with my third Rheumatologist. The first one concluded that my joint pain was a result of Crohn's (after he diagnosed me with Behcet's). My Gastroenterologist disagreed, asserting that I have Behcet's. My General Physician advised me to seek a second opinion. That particular rheumatologist determined that, because of a family history of psoriasis, I either have psoriatic arthritis or AS--he neither examined me or ordered blood work. When recent blood work ordered by my family physician revealed an elevated CRP, my family doctor referred me to yet another rheum. At that time, he also prescribed 15 MG of Mobicox which I can no longer take because of burning. My family doctor told me I could increase my dose of prednisone, but even small increase causes a rash and itching--making reticent to make further adjustments on my own.

I have had my right hip replaced due to osteonecrosis.

I have developed abdominal pain and numbness in my arms. I have also lost 7 pounds over the last couple of days. I thought I would seek help at the Emergency department, but the Gastro on call is the one that I am told gave me an amount of sedation (last scope) that would kill most people. So, I have no confidence in her. My regular Gastroenterolgoist has been on leave since fall has no return date. I feel a sense of despair at the moment.

I am comfortable with the idea of increasing the Simponi and I have a tens machine So, I have an option there.
 

Maya142

Moderator
Staff member
Mobicox is Meloxicam (an NSAID)- Called Mobic in the US. When you say burning, do you mean heartburn? Because a PPI (like Prevacid or Prilosec) can help with that. Celebrex may be a better option for you though.

It sounds like you need to see a better rheumatologist. I am wondering, though, why they are not attributing the joint pain to Behcet's, when I think that itself can cause joint pain?

Elevated CRP does definitely point to something inflammatory, which I am sure you know. I hope the 3rd rheumatologist is able to figure out what. AS or PsA would make sense. Have you been tested for HLA B27? It is a gene associated with AS.

The treatment for AS/PsA is pretty much the same. If your spine is involved, you will need an anti-TNF or IL-17 inhibitor (MTX does not work for the spine). My daughter is actually on both - the IL-17 inhibitor keeps her AS under control and the anti-TNF works for her Crohn's. It is very hard to get two biologics through insurance though. But we finally managed it and so far her AS is MUCH better and her Crohn's is slowly improving.

If you have developed abdominal pain, it is possible you are losing response to Simponi...then upping the dose may help or switching to something else, like Cimzia, might help.

I would ask about drug induced Lupus though because that can cause weird symptoms like numbness - as well as rashes, fatigue and joint pain.

As for the sedation, have you been on opioids a lot? Because it's possible you need more sedation because you have built up a tolerance due to being on opioids. That is the case for my daughter - she is pretty small but boy, it takes a LOT to sedate her because she has been on pain medications for years because of the severe AS.
 

Maya142

Moderator
Staff member
Oh and wanted to add - getting into a hot tub or warm pool can REALLY help. It may sound counterintuitive - when you are in pain, the last thing you want to do is exercise. I often have to drag my girls to the pool. But once they are in, they feel so much better.

Another option, if you cannot tolerate oral NSAIDs, is Voltaren gel. It's a topical NSAID cream. I know in the UK it is OTC. In the US you need to get a prescription for it but a GP could prescribe it. I don't know what country you are in (but I'm guessing not the US??) but perhaps you could try that. It's not as effective as an oral NSAId but according to my daughters it does help and since it is topical, very little is absorbed and it is unlikely to hurt your gut.
 
Hi Maya!

Again, I thank you for your thoughtful and informative posts.

I'll start this post by responding to your questions. You had asked about the burning I experience when taking Mobicox--the burning occurs in my stomach. Since I have had throat ulcers, I now take Pantoprazole twice a day.

I believe my joint pain has not been discussed in terms of the Behcet's disease because there is no consensus regarding diagnosis. My Gastroenterologist believes supports the diagnosis of Behcet's; others in the division of Gastroenterology believe I either have Crohn's or both Behcet's and Crohn's. The first Rheumatologist advised my Gastro that my joint problems would resolve once the Crohn's was addressed. The Gastro found this unhelpful. Unfortunately, I have yet to interface with a Rheum who strives for more definitive answers.

I like your idea of genetic testing as a source of further information. As I understand it, Behcet's and Psoriatic Arthritis are also associated with specific genes. This could be very helpful. And I will raise the question of drug-induced Lupus with the new Rheum.

In terms of the high dose of sedation, I had taken Methadone for 10 years (but have not had it for 5). Do you know if this situation ever self-corrects with cessation of the opioid?

Since I am in so much pain, I will give the pool and hot tub a try--I'm prepared to do almost anything at this point.

I had forgotten that my Dermatologist and the second Rheumatologist have seen signs of psoriasis--scaly patches on my elbows and lifting toenails. It seems that Psoriatic Arthritis can cause shoulder pain--I didn't realize that. These inflammatory conditions are so complex and seem challenging in terms of separating cause and effect.

Maya, does S have shoulder pain? Does she have problems bending or straightening her back? When her AS is flaring, does she feel systemically unwell? Does she lose her appetite when the disease is not under control? If you don't mind sharing, what TNF does she take?

Your daughters are very fortunate to have a mom who is knowledgeable and engaged . Thanks again for your help.
 

Maya142

Moderator
Staff member
M is my complex kiddo - with both AS and IBD (and many other things). She does have shoulder pain, but it is not bad. She has horrible lumbar spine mobility - there is a test rheumatologists do to check how much mobility you have in your lumbar spine. In normal women (she is 21 now), it should over 6 cm. Hers is 2 cm. Her older sister, S, is 4 cm. Both very abnormal.

M also has bad neck pain which can make looking down/working on a laptop difficult. We use heat plus PT/stretching for her neck.

M's AS is aggressive. When it is flaring, she does lose her appetite and feels generally tired and awful. She gets low-grade fevers often up to 100.4-100.5 F when she is flaring.

S's AS is not quite as bad. She does lose her appetite when flaring and fatigue is a big issue. But no fevers for her.

M takes Cimzia along with another biologic and Otezla (a DMARD/immunomodulator).
S takes Cosentyx (which is an IL-17 inhibitor, approved AS). She just moved to Cosentyx after 5 years of Humira plus MTX. She is on 20 mg of MTX.

They are also both on NSAIDs.

Both girls have been on other anti-TNFs - Simponi, Humira, Remicade, Enbrel.

AS and psoriatic arthritis are really sister diseases. You can have psoriatic arthritis and also have spine involvement. That gene I mentioned, HLA B27 is also associated with PsA, but less so than with AS. 80-90% of caucasians with AS have HLA B27. The % is lower with African-Americans (I think 60%-ish).

You can check out Spondylitis.org for more information.

Since you have psoriasis, it sounds like PsA is likely. Honestly, treatments are very similar, except that there are a few more options for PsA vs. AS.

They are really overlapping conditions - both in the spondyloarthritis family. My younger daughter actually qualifies for both diagnoses. That doesn't mean she has two diseases. It just means she has characteristics of both diseases. We are pretty certain she has AS since she already has some fusion, her Dad has pretty severe AS and really she just has a PsA diagnosis since it gives her access to more drugs and she is running out of options.

In terms of sedation - yes, methadone would make you very tolerant to opioids and sedation. I would guess that is why they had to use so much to sedate you. My younger daughter is small but the nurses jokingly say it takes as much sedation to sedate her as it would to sedate a horse!

If you are able to get off opioids, then that tolerance will go away with time, I believe. My daughter is working with a pain management doctor to get off opioids. It is hard, especially since she has pretty bad damage to several joints.

I am guessing since you are on opioids, you have a pain management specialist? Would you be able to see him/her to discuss options for pain management while you are waiting to see the rheumatologist? They may be able to use a higher dose or add a medication - sometimes a muscle relaxant can help. Both my girls take one.

One more question - were you taking Pantoprazole when you tried Mobic (Mobicox)? If you weren't, it may be worth trying that again or another NSAID like Celebrex. My younger daughter has a very sensitive stomach but NSAIDs prevent disease progression so we need all the help we can get. So she takes a PPI and an NSAID as well as Carafate and Maalox to protect her stomach.

Through much trial and error, we figured out she can tolerate 3 NSAIDs - Mobic, Celebrex and Relafen. Relafen works best for her, for my older daughter, her NSAID of choice is Celebrex.
 

Maya142

Moderator
Staff member
In terms of the high dose of sedation, I had taken Methadone for 10 years (but have not had it for 5). Do you know if this situation ever self-corrects with cessation of the opioid?
I'm sorry, I just realized I misread what you wrote. So you're not on Methadone? In that case, your tolerance should have gone away. I was under the impression it does get better, but I guess that is a question for a doctor since they still need a lot of sedation to sedate you.

My daughter is not off opioids yet, so I don't know for sure. I really did think it goes away...that is what we have been told.

Can you then get in to see a pain management doctor? Or even your GP? Someone who can maybe give you something for pain until you can see the rheumatologist.
 
Those of us with coincident conditions must challenge our doctors. What WOULD we do without them? Well, I'm about to find out. My GE of 25 years has been on leave since the fall and I have just learned he will not be returning to practice. As my conditions present atypically, 10 years passed before I was diagnosed. A trusting doctor-patient relationship developed over time. So have any of you experienced the loss of a trusted physician?

My case has been assigned to the new director of GE (my doc's replacement)--I have trepidation about starting anew. While I recognize that "fresh eyes" can be a good thing, the process is overwhelming.
 
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