Joints? Aching? Ugh!

[Lam123]

Hi everyone,
So, about 10 years ago I had a flare that also caused ,y knees to swell, from that moment on, every time I have a flare my knees would swell and hurt. My gastro dr explained it to me as arthritis that is brought on with a flare. Once the crohns calmed down, my knees were back to normal.
Fast forward to this past feb, I had a flare, nothing that lasted very long though. So, my knees did swell but also mainly hurt this time and it took. E awhile to get them better. Mostly just one knee, the other knee is mild, barely noticeable. So I get the knees under control with rest and ice. Now this week they are really sore again, sore when I bend it. I have been applying ice and rest. But now it's happening when I'm not in a flare. I mentioned it to my gastro last time and he said I might need to see a rheumatologist and add methotrexate to my weeky humira. So I have an appt this week to get referred to a rheumatologist.
Everyone I know applys heat to arthritis, but I find heat makes me way worse. Also, I have been applying ice and it helps. Does this sound familiar to anyone?
I am so worried about going on methotrexate and losing my hair!
Any thoughts or experiences would be greatly appreciated.

 

[Lam123]

I meant to add, that for the last few months I feel very still in the morning. Dry stiff all over.

Also, this week when things started up again, I went into a hot tub, which I never do.

 

[Maya142]

One of my daughters loves ice, the other loves heat. We have been told to use whatever works, both are ok.

It does sound like you need to see a rheumatologist. For what it's worth, my kiddos did not lose hair on MTX. You will be given folic acid with it which prevents (or lessens) side effects and you can always up the dose of it if necessary. You can also take a supplement - Biotin - which might help a little with hair loss.

Good luck!

 

[Maya142]

Stiffness is pretty common with arthritis - morning stiffness is one of the classic signs of inflammatory arthritis. A hot shower in the morning helps both my girls.

 

[Lam123]

What dose of folic acid is given? What do your girls do when the arthritis is acting up?
I have been adding ice, elevating and resting it, but doing some walking aswell. I'm sure if I lost some weight it would help aswell.

 

[Maya142]

Ice and heat, TENS unit, gentle movement - low impact (swimming, biking, walking), stretching, physical therapy, massage. If all else fails, steroids - either a steroid shot directly into the joints that are very inflamed or if it's many joints then oral steroids.

 

[Maya142]

Folic acid - we started at 1 mg and upped to 2 mg daily. That was because of nausea and fatigue, not hair loss.

Weight loss will definitely help knee arthritis! It's tough when you are in pain, but try to stay moving.

 

[Lam123]

What's TENS unit?

I have recently started swimming and have a puppy to walk daily, so hopefully that helps. I was thinking of trying physical therapy too.

 

[Maya142]

Transcutaneous electrical nerve stimulation (TENS or TNS) is the use of electric current produced by a device to stimulate the nerves for therapeutic purposes. TENS, by definition, covers the complete range of transcutaneously applied currents used for nerve excitation although the term is often used with a more restrictive intent, namely to describe the kind of pulses produced by portable stimulators used to treat pain

A physical therapist can get you a TENS unit or you can get one online. The purpose is to distract your nerves so you feel less pain.

 

[Lam123]

Ok, do your kids follow a gluten free diet? I have heard lowering certain foods helps. A lot of people claim removing gluten has helped.

 

[Maya142]

No - we tried it and it didn't help at all. Our rheumatologist said we could try it but it was unlikely to help unless they had celiac disease (which they don't).

 

[Lam123]

Ok, good to know.
Thank you so much for taking the time to answer all my questions and supply me with excellent information. This is all new to me since I'm the past all the joints calmed down when the crohns calmed down.
I truly appreciate it!

 

[Maya142]

Good luck!! Hope you can get in to see the rheumatologist soon :ghug:.

I wanted to add - there is no harm in trying gluten free or whatever you want to try. We figured if it helped that would be great, if it didn't well then, they'd go back to eating gluten.

It didn't work for us but anecdotally I have heard a few parents say it helped their kids. We try to have the girls eat healthy food and a balanced diet, but that's all we do.

The other thing that might help is Voltaren gel - it's a topical NSAID so not as much is absorbed and it shouldn't bother your gut. A rheumatologist can prescribe it. We also use an OTC knee brace for extra support sometimes (just from Rite Aid or CVS - nothing fancy).

 

[Lam123]

Ok, thank you!

 

[Lam123]

One last question, when their joints are bugging them, how often in a day do they apply ice or heat?

 

[Maya142]

Honestly - whenever they want to. It won't hurt you, as long as you don't keep ice on too long. The rule of thumb is 20 minutes on, 20 minutes off. When they are in a lot of pain, they try to distract themselves, so they will ice while watching TV or doing something to keep their minds off the pain.

 

[Lam123]

Ok, good to know.

 

[teeny5]

Ok, good to know.
Thank you so much for taking the time to answer all my questions and supply me with excellent information. This is all new to me since I'm the past all the joints calmed down when the crohns calmed down.
I truly appreciate it!

I had a friend who had arthritis issues in her hands and found that dairy and gluten made it worse.

 

[Lam123]

I had a friend who had arthritis issues in her hands and found that dairy and gluten made it worse.

Thanks!

 

[Lam123]

Also, is it common during a flare of arthritis that when I bend my knee it hurts and I can only bend it about half way, is that common with arthritis?

 

[Lam123]

Maya142,
I meant to ask you, if your girls are not in a flare with their hints, can they do all normal activities before arthritis? Or still need to be careful?

 

[Maya142]

They tend to stick to low impact activities. But that also has to do with the severity of their arthritis - it depends. Both of them have many joints involved (especially my younger daughter) and both also have permanent damage to their hips and SI joints.

Plus high impact stuff (like jogging) hurts them, so they just avoid it.

My younger daughter has a lot of trouble with standing for a long time or walking long distances but that is because her AS is not controlled, unfortunately. She has a wheelchair but she only very rarely uses it.

She has MANY joints involved - knees, hips, SI joints, lumbar spine, elbows, wrists, fingers, ankles, heels, jaw etc.

My older daughter has well-controlled arthritis and can do most things. She has fewer joints involved and since Humira and MTX are working well for her, she lives a mostly normal life.

Your rheumatologist can tell you what he/she recommends specifically for your situation - it really depends.

 

[Lam123]

They tend to stick to low impact activities. But that also has to do with the severity of their arthritis - it depends. Both of them have many joints involved (especially my younger daughter) and both also have permanent damage to their hips and SI joints.

Plus high impact stuff (like jogging) hurts them, so they just avoid it.


My younger daughter has a lot of trouble with standing for a long time or walking long distances but that is because her AS is not controlled, unfortunately. She has a wheelchair but she only very rarely uses it.

She has MANY joints involved - knees, hips, SI joints, lumbar spine, elbows, wrists, fingers, ankles, heels, jaw etc.

My older daughter has well-controlled arthritis and can do most things. She has fewer joints involved and since Humira and MTX are working well for her, she lives a mostly normal life.

Your rheumatologist can tell you what he/she recommends specifically for your situation - it really depends.

I am finding that my knee hurts if I bend it too far or twist it at all, is that normal for arthritis? I have an appt tomorrow with my family dr to get referred.
One last question, when I started getting flares with crohns, that used to be the only time my knees acted up, as soon as the crohns was under control, so were my knees. But I had a flare in late Jan this year and my knees have never been the same. This is the first time they are acting up without a crohns flare. Is that possible? That I have arthritis that used to only act up with crohns but not acts up individually?

 

[Maya142]

Arthritis flares can either parallel IBD flares or they can occur independent of IBD flares. Generally, when large joints like knees flare, it's when the IBD flares. But there are always exceptions.

If the arthritis is independent of the IBD, then you need to treat it independently - with something like MTX or increasing the dose of your biologic etc. If it flares when the IBD flares, then you treat the IBD and the arthritis goes away.

As for your specific case, these are questions you should ask a rheumatologist. A rheumatologist can differentiate between arthritis (inflammation) and arthralgia (joint pain). They can also differentiate between osteoarthritis (wear and tear) or inflammatory arthritis (inflammation). So you really need to see a rheumatologist to ask questions about your specific case.

Hope you can get in to see one quickly.

I like CCFA's explanation: http://www.crohnscolitisfoundation.org/assets/pdfs/arthritiscomplications.pdf

 

[Lam123]

Arthritis flares can either parallel IBD flares or they can occur independent of IBD flares. Generally, when large joints like knees flare, it's when the IBD flares. But there are always exceptions.

If the arthritis is independent of the IBD, then you need to treat it independently - with something like MTX or increasing the dose of your biologic etc. If it flares when the IBD flares, then you treat the IBD and the arthritis goes away.

As for your specific case, these are questions you should ask a rheumatologist. A rheumatologist can differentiate between arthritis (inflammation) and arthralgia (joint pain). They can also differentiate between osteoarthritis (wear and tear) or inflammatory arthritis (inflammation). So you really need to see a rheumatologist to ask questions about your specific case.

Hope you can get in to see one quickly.

I like CCFA's explanation: http://www.crohnscolitisfoundation.org/assets/pdfs/arthritiscomplications.pdf

I'm also wondering if the crohns is possibly slightly active, I have very loose bowel movements today which is not the norm for me.

 

[Maya142]

It could be that your IBD is active and that's causing the arthritis. Have you had blood work or a fecal calprotectin recently? It would be good for the rheumatologist/GI to know whether your IBD is under control or not.

 

[Lam123]

It could be that your IBD is active and that's causing the arthritis. Have you had blood work or a fecal calprotectin recently? It would be good for the rheumatologist/GI to know whether your IBD is under control or not.

The last time I had blood work was early April. I'm due again mid Aug.