Severe joint pain - what helps???

[AmyJo]

Hi there, new to the forum - and pretty much to Crohn's.
Diagnosed after ending up in hospital with severe flare up July 1, 2013.
Was on prednisone for 3 months. Currently taking 4G of Pentasa a day, vitamin D, B complex with C, and Iron. Went off iron for a bit but started back on as energy levels dropped noticeably.
I'm pretty lucky. Pretty much have been in remission for last while, with the exception of mild to moderate stomach pain and bathroom issues.
My main concern lately is joint pain. For 3-4 months I experience mild to extreme joint pain. Mainly fingers, wrists, knees and feet. Sometimes it's so bad I can barely walk or hold a glass. It's affecting my sleep, always worse at night - usually starts getting worse around 4/5pm. I've tried tylenol, tylenol arthritis, baths with Epson salt, Enamul gel...nothing works.
Sometimes it just annoying aches, sometimes unbearable pain. I've even resorted to taking an Oxy a few times, which helps - but they keep me awake all night so then I'm just beat next day.
I have another GI apt next week, but does anyone have any advice???
Thanks in advance

 

[LodgeLady]

I think it's the Pentasa. After 2 months on 4 G, I started feeling achy and it progressed to shoulder and elbow pain on my left side. I asked my GI about it and he said no it's not the Pentasa. So, why did it all start after I started taking Pentasa? He said to take occasional Naproxen or Aleve ( with food). That has helped but my joint pain persists.

The real question is do people with Crohns also have joint pain as a symptom of Crohns?

 

[aideen33]

I have this as well. Im on Asacol and Prednisone right now. I am however told that joint pain and arthritis are not uncommon as a complication of Crohns so i figure it could be that rather than the meds tho I havent ruled the meds out either

 

[crohnicaly stinky]

I noticed my joint pain started to come back a few days before I was due for my once every two week Humira shot and after the shot it got better but never went away. So I added a ginger extract capsule to my morning handful of pills/supplements and I also drink Pukka Herbs Three Ginger Tea in the evenings, it tastes really good, at least to me. I have noticed a great reduction in joint pain, this is really working for me. It took two weeks to take full effect and at first the capsule made me feel like I had taken too much caffeine for about an hour after I took the capsule. But now I don't get that feeling anymore. Good luck

I tried it after reading this:

http://www.ncbi.nlm.nih.gov/pubmed/11710709

Arthritis Rheum. 2001 Nov;44(11):2531-8.
Effects of a ginger extract on knee pain in patients with osteoarthritis.
Altman RD1, Marcussen KC.
Author information
Abstract
OBJECTIVE:
To evaluate the efficacy and safety of a standardized and highly concentrated extract of 2 ginger species, Zingiber officinale and Alpinia galanga (EV.EXT 77), in patients with osteoarthritis (OA) of the knee.
METHODS:
Two hundred sixty-one patients with OA of the knee and moderate-to-severe pain were enrolled in a randomized, double-blind, placebo-controlled, multicenter, parallel-group, 6-week study. After washout, patients received ginger extract or placebo twice daily, with acetaminophen allowed as rescue medication. The primary efficacy variable was the proportion of responders experiencing a reduction in "knee pain on standing," using an intent-to-treat analysis. A responder was defined by a reduction in pain of > or = 15 mm on a visual analog scale.
RESULTS:
In the 247 evaluable patients, the percentage of responders experiencing a reduction in knee pain on standing was superior in the ginger extract group compared with the control group (63% versus 50%; P = 0.048). Analysis of the secondary efficacy variables revealed a consistently greater response in the ginger extract group compared with the control group, when analyzing mean values: reduction in knee pain on standing (24.5 mm versus 16.4 mm; P = 0.005), reduction in knee pain after walking 50 feet (15.1 mm versus 8.7 mm; P = 0.016), and reduction in the Western Ontario and McMaster Universities osteoarthritis composite index (12.9 mm versus 9.0 mm; P = 0.087). Change in global status and reduction in intake of rescue medication were numerically greater in the ginger extract group. Change in quality of life was equal in the 2 groups. Patients receiving ginger extract experienced more gastrointestinal (GI) adverse events than did the placebo group (59 patients versus 21 patients). GI adverse events were mostly mild.
CONCLUSION:
A highly purified and standardized ginger extract had a statistically significant effect on reducing symptoms of OA of the knee. This effect was moderate. There was a good safety profile, with mostly mild GI adverse events in the ginger extract group.
Comment in
Is there a role for ginger in the treatment of osteoarthritis? [Arthritis Rheum. 2001]

 

[AmyJo]

Thank you all for your help.
I am definitely looking into some sort of ginger extract - as it seems to be a common response in helping ease the pain.

@lodgelady - I don't think its the Pentasa - joint pain is a common occurrence for Crohn's patients, whether on Pentasa or not. I have been on Pentasa for over a year, but this is new....

Thank you!

 

[ILDan]

Crohn's since 1989 at age 15. Rheumatoid arthritis began in college. Stretching, yoga and believe it or not, rock climbing all help me retain my range of motion. Obviously, some days, pain and mobility limit these activities, but even if I can manage only a limited workout, I feel better. Remicade and Humira are prescribed for both Crohn's and RA. Perhaps you could discuss w/ your Gastro. Ice is my best friend. I wish you all the best.

 

[crohnicaly stinky]

AmyJo I take Lialda, same drug different delivery system, as pentasa, and I have not noticed any link to my joint pain. But we each have our own custom version of this disease. Good luck with the ginger, I hope it helps.

 

[afidz]

I'm pretty lucky. Pretty much have been in remission for last while, with the exception of mild to moderate stomach pain and bathroom issues.

That sounds like you are still in a flare to me. That being said, IBD and joint inflammation go hand in hand. If you are still experiencing flare symptoms, it makes sense why your joint pain as been bothersome.

I don't know how the Canadian healthcare system works as I live in the US, but I would try to get a referral to see a rheumatologist. I only just started seeing one this past month and I already feel so much better.

Along with epsom salt I have been putting ginger and cinnamon in my baths, maybe it helps maybe it doesn't, in general I feel better after a good soak. Both of those ingredients have anti-inflammatory properties. I have rubbed a small (very small) amount of ginger on my knees and wrist, rinsed it off and then let them soak in hot water and I felt like it made a difference. However. Don't let it sit on your skin, rub a small amount on and then rinse it off right away. I made a mistake of using too much and letting it sit on my skin and my skin couldn't handle the heat. There is a very delicate balance, less is more.

I normally don't do homeopathic remedies, much less suggest them, but for me, it helps.

 

[aideen33]

Not to hijack but on a related note.... Ive been pretty much continuously flaring since dx in june. Had a bad experience with my last gastro (Long story) but the readers digest version is im on Asacol HD and pred 20mg/day right now till I get into to see the new gastro i was just referred to. That doesnt happen till November but whatre ya gonna do. Would those with more experience suggest that the gastro can effectively manage the nasty joint pain or do i need to be asking to see a rheumatologist at this point do you think?

 

[Tony H]

I find that even when I am not flaring in the colon (no d) , my joint pain can be really bad ,fingers ,shoulders,but the worst for me is the hip pain , and nothing helps apart from heat and that only helps a little , I saw a rheumatologist about 2 months ago and he prescribed methotrexate but as I was going through a bad flare I did not take it , I might start taking it soon as the flare seems to be easing off a little , so hopefully methotrexate will help when I eventually get up the courage to try it ,
Hope you feel better soon .

 

[pete b]

I have hand and knee joint pain crohns consultant gave me sulfalazine but that's not doing much

 

[LodgeLady]

I have hand and knee joint pain crohns consultant gave me sulfalazine but that's not doing much

Isn't that in the same family as mesalamine? It's just really strange that my joint pain significantly changed when I started the Pentasa. BUT maybe my Crohn's condition is changing and if the two are so related may make sense.

I thank everyone for your comments. There is just no way I can decifer all these symptoms. You guys really put things into perspective :ghug:

 

[pete b]

Yeah same as pentasa but used to treat both ibd and arthritis but so far no good

 

[Dixiedoll23]

After being admitted in the hospital last month, I started on prednisone and after a few days of being on that, I remember walking down the hall with my IV, and thinking "Oh my gosh! I can walk." I didn't know just how crippled I was until the prednisone kicked in I guess.When I go from a sitting to a standing position I have to do it in stages.I'm always in a big tight ball, I feel like I can barely use my hands anymore.
Tumeric is supposed to be an anti-inflammatory, I started it but stopped since I have a blockage right now and scared to take anymore than I have to.Next time I start that though, I'm taking 3 a day instead of the recommended 1.
Someone mentioned taking aleve or naproxen, but I was told to never take those meds.The GI said they can either start a flare, or make one worse.Seems like the only option is tylenol or a narcotic, and tylenol doesn't help.
It sucks feeling like a 90 yo everyday.

 

[ILDan]

To: aideen33
"Would those with more experience suggest that the gastro can effectively manage the nasty joint pain or do i need to be asking to see a rheumatologist at this point do you think?"

Your Gastro should have a good handle on your joint issues. Mine understands the pharmacology, but I do take the initiative to need to address my joint issues. It's never his first thought. It's not that he does not understand the correlation, he's just a gut guy.

Many of the drugs for Crohn's are also prescribed for arthritis. Remicade, Humira, Methotrexate all dance two tunes.

If, however, you don't get the feeling that the Gastro isn't up to the task, then by all means, seek out a dedicated rheumatologist.

November is a long way away. Perhaps the rheumatologist schedule is more open. Again, there's tons of crossover in drug therapy so you wouldn't necessarily be wasting time before the Gastro.

 

[ILDan]

Someone mentioned taking aleve or naproxen, but I was told to never take those meds.The GI said they can either start a flare, or make one worse.Seems like the only option is tylenol or a narcotic, and tylenol doesn't help.

Stay away from NSAIDs--non-steroid anti-inflammatory drugs. Anything with Ibuprofin falls into this category. These drugs do, in fact, cause flares in Crohn's Disease.

I'm sorry that the Tylenol has stopped working. I'm in the same boat and narcotics scare the hell out of me. I must say, however, that my father has been on narcotic pain relief for a degenerative bone issues and he has not been adversely affected. In fact, his lifestyle has prospered. Perhaps we need to consider that avenue...

 

[AmyJo]

Truly appreciate everyone's input. A lot of things to bring up at my apt next week and hopefully one will help!!!!

 

[DSTURBED]

Good luck with your appointment

 

[Tony H]

the methotrexate did not help with the joint pain , stopped taking it , waiting for an appointment with a new GI , hopefully she will help as she has a good reputation .

 

[ILDan]

I was talking to my doc about my RA pain yesterday. He prescribed a Ketamine cream. We'll see how it goes. Good luck to you.

 

[Ann Morgan]

Hi there, new to the forum - and pretty much to Crohn's.
Diagnosed after ending up in hospital with severe flare up July 1, 2013.
Was on prednisone for 3 months. Currently taking 4G of Pentasa a day, vitamin D, B complex with C, and Iron. Went off iron for a bit but started back on as energy levels dropped noticeably.
I'm pretty lucky. Pretty much have been in remission for last while, with the exception of mild to moderate stomach pain and bathroom issues.
My main concern lately is joint pain. For 3-4 months I experience mild to extreme joint pain. Mainly fingers, wrists, knees and feet. Sometimes it's so bad I can barely walk or hold a glass. It's affecting my sleep, always worse at night - usually starts getting worse around 4/5pm. I've tried tylenol, tylenol arthritis, baths with Epson salt, Enamul gel...nothing works.
Sometimes it just annoying aches, sometimes unbearable pain. I've even resorted to taking an Oxy a few times, which helps - but they keep me awake all night so then I'm just beat next day.
I have another GI apt next week, but does anyone have any advice???
Thanks in advance ��

Are you sure you don't have Rheumatoid Arthritis ? My sister has RA and it really affects her hands and feet. I have arthritis in my neck, shoulders and hips, but it is not Rheumatoid arthritis.

 

[Ann Morgan]

Stay away from NSAIDs--non-steroid anti-inflammatory drugs. Anything with Ibuprofin falls into this category. These drugs do, in fact, cause flares in Crohn's Disease.

I'm sorry that the Tylenol has stopped working. I'm in the same boat and narcotics scare the hell out of me. I must say, however, that my father has been on narcotic pain relief for a degenerative bone issues and he has not been adversely affected. In fact, his lifestyle has prospered. Perhaps we need to consider that avenue...

When doctors ask me if I am allergic to any medications, I say no......BUT I always tell them that I cannot take Ibuprofen because of my UC. I am learning more and more all of the time about my UC. Like back in November my Primary Care Physician prescribed me some antibiotics. Believe it or not I had no idea that I should not really be taking antibiotics when having UC. So, now I was just diagnosed with c-diff and I have never had c-diff before. All of my doctors get a detailed list of my medications, health issues and surgeries every time I see a new doctor, so all of that is in their file. :eek2: