Rheumatologist useful?

[Whit]

Angrybird suggested I see a rheumatologist since I have swollen joints and two herniated lower back discs. I know they deal with arthritis per se, but related to Crohn's? I am loath to spend more time in a doctor's office unless I think it might be worth it. So far, since I'm 68, most of the comments are arthritis typical for old age, but I'm not sure.
Has anyone else seen a rheumatologist and gotten good info?

 

[Cozmo]

Hi Whit,

I'm in a similar situation as you at the moment. I've had a consultation with the rheumatologist, also an xray(all clear), and I am awaiting an MRI scan on the 18th December, all related to my Crohns. I share the same doubts as yourself, about whether or not it is necessary. I suppose in one way it helps to cover all angles. Sorry I can't offer you a more productive reply, but I'd be interested to hear how it goes with you. Keep us posted

 

[lizzy16]

Hi Whit,

I hope your joints aren't causing you too much pain.

Unfortunately I don't have a great story, hoping you have more success than me! I was referred to a rheumatologist in early 2011 for my all-over joint pain (this was pre-Crohn's diagnosis, the connection between my stomach problems and my joints had not yet been made). He asked me to walk to the end of the room and back, said that I pronate when I walk (my feet turn inward). He told me I needed arch support and to buy in-soles for my shoes and charged me $200 for the consult. He didn't address the fact the pain was also in my shoulders, elbows and fingers as well as my legs and that the inflammation moved from day to day.

I was just lucky and my joints improved as soon as I received the Crohn's diagnosis and started on steroids. I hope this story hasn't put you off, there are a lot of great doctors out there who know how to ask the right questions, I just didn't see one of them on this occasion. Please let us know how you go.

(PS - he was right about the in-soles).

 

[muppet]

We've had mixed luck with Rheumatology, from one loser who told my daughter to take Aspirin every morning for her full-body pain, to a rheumatologist at Boston Children's who did a full gait study, took dozens of images, was perplexed by the lack of arthritis calling cards, but prescribed PT and OT and a TENS machine that probably would have helped a bit if a new emergency hadn't stopped us pursuing it all.

You have to shop around, unfortunately. Some are utterly worthless and others are very thorough. My general advice with specialists of any type is to gravitate toward large metro hospitals with a university affiliation.

 

[KayleighMeek]

Hello,
I see a rheumatologist as I have enteropathic arthritis caused by crohns disease and I have to say it has deffinatley been worth it. The GI dr's couldn't do a lot for my joint pain but with the rheumatologist they have been able to give me steroid injections if needed and have started me on another medication that the GI wouldnt prescribe and so far it is really helping. I don't know how I would have been able to carry on the way I did as I had horrible pain so I deffinatley think it's a good idea to give it a go. If you get nothing from it and don't think it will benifit you at least you can say that you have all the answers you need and that you gave it a go. X

 

[kubby123]

Hi I work for a rheumatology office and we see several patients with joint pain caused by crohns disease. I would give it a shot. I actually saw one for feet pain which led him to order me a b12 level it turned out low and that was my first sigh of crohns (besides the aweful stomach pain).

 

[tots]

A rheumatologist also sees people with auto-immune problems.

I am thinking of seeing one- I am guessing exploring all possibilities cant hurt!

I am also thinking of seeing an acupuncturist- I figure if I look around enough corners I will find a combo that works for me.


Lauren

 

[Jennifer]

Hi Whit! I have a Rheumy and he's one of the best doctors I've ever had. I don't have RA but do have osteoarthritis which all my doctors (GI, GP and Rheumy) say was caused by Crohn's since I'm only 30 and its in my back, hips, wrists, hands, feet and I think my knees now (the knees are a guess since they recently started hurting but the pain is the same, just haven't had x-rays there to prove it, everywhere else has been x-rayed). So far my Rheumy is treating my Crohn's as he thinks that's the main problem right now. He started me on Humira and my joint pain did go away yet sadly I got sick too often and had to be taken off of it. I'll be starting Remicade in January. He's much more proactive in treating me more than my GI. If you have joint pain, I highly recommend seeing a Rheumatologist.

 

[Earnellzwifey]

Hi Whit I also have a rheumy. He is the one that has me on Remicade. I also have a disease called Behcet's Disease and it is rheumy, it has a lot of similar symptoms to Crohn's. I also have a lot of joint pain in my neck, shoulders, back, hips, knees, lower legs, ankles, and feet. For the most part they have attributed it to arthritis except for some odd findings on the MRI of my lower legs.

I my humble opinion it would be worth a go. I just hope you find a good one that will fully investigate your problems and not just try to dismiss you off.

Please keep us updated on what ever you decide to do.

 

[ron50]

I have a GI ,she does all of my cancer scopes plus endoscopies. I have a nephrologist and a rheumatologist. The neph is for a so far undignosed auto immune problem with my kidneys whilst the rheum lokks after my psoriatic arthritis,osteoperosis from high dose pred,plus alkylsing spondolitis. He and my neph keep in contact and try to work out which drugs will help both problems. My rheum also put me on trials of lyrica,neurontin and endep for moderate neuropathy. Both he and my neph want me on humira. It made such a mess of my wife I would not do it . Now my neph is talking cyclosporine,cyclophosphormide or imuran. I don't want any of them. Now that questran is getting my chronic diarrheah under control I'll ask to go back on mtx. Trouble with all thes crap drugs is that they are to stop disease progression.....Too bad about the damage already done....Ron.

 

[Ozboz]

I went to see a rheumatologist got miss diagnosed first time then got another opinion and discovered i had ankylosing spndilitis.wgich is directly related to crohns today my hip and knee were killing me and have couple fused vertibrae in lower back yay for me

 

[KatyBuckeye]

I just started seeing a rheumatologist for joint pain. She hasn't yet figured out if it is IBD-related or a separate type of inflammatory arthritis, but she is, hands-down, the BEST doctor I have ever seen. She actually wants to really figure out the cause so that I can start feeling better. I definitely think a consult would be worthwhile.

 

[Whit]

Went to see a rheumatologist and after blood tests and x-rays he says there is no direct correlation between my arthritis and Crohn's. He didn't offer to go any farther and help with my pain and I wasn't too impressed.
Whit

 

[juljul]

Hi Whit,

There are way too many sloppy and blinkered Drs out there. I made the mistake of going for short notice appointments - i.e. those available at short notice. Worse mistakes ever and undiagnosed for so long because of it, got rude Drs, no biopsies taken when they should have been, results overlooked in my file, etc. I have now come to the conclusion that it is better to wait, even if that means waiting for a good while. I am concluding from my own experience anyway that if a Dr has a long waiting list - there is a reason - he or she must be booked up (presumed popular) for a reason.

You definitely have to shop around. Get second and third opinions if necessary because some of them just don't care to find out what is wrong and make the wrong presumptions. I have yet to find a good Dr so I am quite frustrated and flaring bad from the stress of it all. I believe I have Crohn's (not diagnosed yet) and also Lupus, and got a +ve blood result FOR Lupus (supposed to have 95% specificity...anti-dsDNA) yet the Rheumy I saw, who I only saw the once, did not diagnose me with Lupus because I have no malar rash...which I think is ridiculous.This Rheumy has no experience basically. I since found out they have not long been in the UK (from India) and they have been a Rheumatologist for only a year - was in Internal medicine prior to that in India. I am hoping to see a Lupus expert ...even if it means a trip to London.

I agree with muppet regarding finding one at a hospital with a university medical school affiliation. It makes sense. Those with longish waiting lists are worth researching. It is best to research the Dr beforehand if you can.

juljul xx

 

[lsgs]

My rheumatologist has been my life saver. In my experience rheumatologists are the most compassionate doctors I have ever dealt with and will actually listen to your concerns and not just dismiss them. They treat you as a person, not a lab result.

 

[juljul]

Hi Isgs,
Having years of experience under their belt and people skills to boot is key I think. And willingness to listen to patients is really important as you have pointed out. Some of us have to shop around because we are complex cases and they don't all like a challenge because if they 'fail' or feel a threat of 'failure' it is a problem for some of them. Being willing and able to work with other consultants in a different specialisation is also important where there are multiple issues. Having an understanding and helpful GP who can mediate if necessary is a good thing.

juljul xx