Now I Have Inflammatory Arthritis! Starting Humira. Does Anyone Else Have Ra??

[Kris4444]

Hi,

My rheumatologist noticed the swelling in my hands which I had attributed to leaky capillaries and said he wanted to do an ultrasound to see if there is any joint inflammation. His reason being that he feels that I have systemic inflammation and that a biologic drug, like Humira, may be just what I need for all the inflammatory issues that I have such as:

Microscopic Colitis

Colonic inertia

Thyroid nodules

Bladder Inflammation

Kidney Inflammation

UCTD

The list goes on and on. In order for him to get permission for me to try a drug like Humira, you'd have to have rheumatoid arthritis. My ultrasound did show inflammation, fluid around the joints and some beginnings of joint erosion. So the good news is I should pass the test for insurance and get to try the drug.

I am hesitant though because of all of the side effects. I wonder if anyone out there has my type of issues and has tried a biologic?

Thanks,

Kris

[ramakentesh]

Hi

I developed relapsing remitting Ankylosing spondylitis and POTS at the same time. In my case the pots side of things appears to be caused by small fiber autonomic neuropathy.

There is a thought that most cases of secondary POTS with other systemic autoimmune disease may be small fiber related. Small fiber neuropathy and POTS in sarcoidosis completely resolved after a patient was put on humira, suggesting it may be cytokine inflammation of the small fibers.

I was supposed to start simponi a while back but every time i go to start it my AS goes into complete remission for months on end.

PM me if you want more details.

[arizona girl]

Rama your pm's are full I think. I tried to pm you and it says your not receiving messages.

[Kris4444]

Thank you Rama. I wonder how many people with EDS and ANS issues have inflammatory forms of arthritis. Seems like once your body goes haywire you get everything under the sun.

[ramakentesh]

Weird - my inbox seems empty.

[ramakentesh]

Not sure about EDS. Ive got other weird stuff going on occasionally but I gave up trying to get the doctors to give me a name for it

[arizona girl]

Check your settings, maybe you have them set to not accept messages.

[ramakentesh]

Im not that antisocial! But maybe it happened by accident. I pmed you my email address anyway.

[arizona girl]

Good to know. I will e-mail you!

[ramakentesh]

I worked it out - it was actually full. sorry.

[Katybug]

Hi Kris,

I was on a biologic called Xolair that treats a very different issue but comes with the same black box warnings as Humira and the other biologics. The Xolair suppresses IgE and is used in some patients with mast cell issues although that is an off label use. It did help reduce some of the inflammation in my body that was being caused by the mcas. I didn't have any ill side effects from it (at least ones you can see immediately, the really scary ones take time to develop). I can no longer get it because of a change in my insurance. I was given my last shot 2 weeks ago so we don't yet know what will happen once it's out of my system. I went ahead with it because we had run out of options for drugs to try to control my mast cell issues. And, none of the doctors had a good explanation for the extreme inflammation in my body although they all agreed it was there. So, the immunologist decided we knew about the mast cell issues and we would do everything we could to attack that problem and see what that left me with. It was the best treatment option anyone was presenting to me at the time but it was scary to take the plunge. I felt like I was playing Russian roulette with medication because of the black box warnings, so I get that you have some hesitation. I continue to wish you well on your journey.

Katie

[Chaos]

My son had an acute onset of inflammatory arthritis/ankylosing spondylitis last year. Humira has been a miracle drug for him. I hate all the possible side effects but seeing him looking like a 90 y/o man barely able to move and in severe pain wasn't so great either.

[Kris4444]

Hi Katie,

I'm so sorry to hear that they have taken this drug away from you. Was it helping? What differences did you notice with the mast cell issues? Do you think that Humira may help me with that part of it too? That is what we are hoping for, that it will start taking care of ALL the inflammation as I seem to have it everywhere with no logical explanation as to why. I can be fine one day and a mess the next. Some of the inflammation I didn't even know about, like the bladder stuff. I went to the doctor because I was leaking urine when I rode. They did a test with a camera and he told me that I was having frequent bladder infections due to the amount of old scarring he was seeing. He showed me the darkend areas on my bladder that were signs of previous inflammation. Weird thing is I never had the "normal" signs of infection, burning while urinated, having to go frequently....thyroid too, no big warning signs yet when they did an ultrasound they found 7 nodules. I asked them why and they said inflammation, story of my life.

Hi Chaos,

I'm sorry about your son. It is great to hear that he is doing well on Humira. Have you noticed any side effects?

Thank you for resonding. I can never get over the fact that every time I thow a "help me" out there you guys always repsond!

-Kris

[Katybug]

Hi Kris,

I was getting some mild benefits from the Xolair. My suspicion is that some happened so slowly over time that I didn't realize it was helping but will once its out of my system in a month or so and the symptoms return or worsen. I had marks on my hips , thighs, and breasts that everyone but my immunologist insisted were stretch marks. But I knew they were something else because they changed color , intensity, and sometimes felt tender to touch. Immunologist said he thought they were vascular lesions from inflammation. The Xolair made all of them go away except for a very small area on my inner thighs. Just also had less potsie symptoms after eating which leads me to believe there might be foods I have mast cell reaxtions to but haven't figured out yet. My breathing was slightly better than before this tx although by no means good and normal. I was experiencing fewer rashes and that reticulated rash I would get in the sun hasn't appeared since Xolair tx. I also have felt a reduction in my overall pain levels particularly in my joints...again not that the pain is gone, just decreased.

I don't get the impression that Humira will directly help your mast cell issues. Xolair targets IgE and therefore has a ripple effect on mast cell degranulation. But I do think that there is no telling which symptoms might be relieved once you systemically start to get rid of inflammation. I never would have predicted that the vascular lesions on my thighs, hips, and breasts would have been one of the most noticeable improvements from Xolair. Inflammation is so insidious that I think we often don't know what damage it's doing until we start to get it under control.

[Chaos]

Hey Kris,

No he hasn't mentioned any side effects. Haven't observed any either. Just know that within a week of starting it, we were able to see almost daily improvements in his symptoms and he started getting back to being able to do the things he has always liked to do. He literally had been looking like a 90 y/o man creeping around, not able to get out of bed, roll over, turn his head, use his right arm, put weight on his leg, etc. without excruciating pain (and he has a high pain tolerance). Within a month he was able to play basketball again. He still has some pain post exertion if he does impact activities so now he has taken up rock climbing. Ugh!

[Kris4444]

Katy,

Oddly I can't really complain about much pain right now in my joints (knock on wood). It will be interesting to see if that is because I have grown used to the pain. My biggest disability at this time is that my stomach and colon are not working and I'm in constant pain from that.

I have been weaning off my meds just to take a break. The one thing I've noticed is that the clonidine (which was prescribed by Mayo) really made a huge improvement with my flushing, sweating and vertigo. I am down to a half a pill in the evening and have noticed a definite increase in my flushing and I am back to sweating profusely after showering and eating. If this continues I will go bank on it.

Chaos,

Great news about your son! Rock climbing huh? Lol, out kids like to keep us worrying.

[Chaos]

Tell me about it. Now all 4 of my kids have decided rock climbing is just great. Double ugh! Like I needed more things to worry about......

[ramakentesh]

Great that humira has helped chaos

[ramakentesh]

As in your son lol

[AshleyPooh]

I do wonder about inflammation for myself. I have what doctors first tried to say was fibromyalgia, then myofascial pain syndrome ( as it mainly occurs in my shoulders and upper back.) I wonder if it's not really an inflammation issue from something I don't know about. If i had insurance i'd investigate further, but no one wants to mess with me :/

[Kris4444]

I have fibro too. Was diagnosed with it when I was about 19 after not recovering from being rear ended in a car accident. Same areas of pain.

[Jamals_Angel]

I have Crohn's Disease and have been taking Humira 40ml Injections every other week for almost 1 year, also taking Imuran (Azathioprine) 50mg 1x a day for also about a year. I have not had any side effects, although my Creatinine levels are now rising and Kidney doctor is unsure why. I was just diagnosed with Chronic Idiopathic Uticaria (Chronic Hives, caused by Immunodeficiency). My allergy/Immunology specialist is suggesting Xolair as all other scripts I have tried have failed. Has anyone taken Humira and Xolair together? There doesn't seem to be much literature or medical studies on taking the two combined. 

I also have Fibromyalgia, Chronic Migraines, and I just had my first hip replacement, have to have the second next year, as well as both knees replaced. 

Thanks!

[Kris4444]

Humira ended up giving me autoimmune hepatitis. Luckily we caught it before any permanent damage was done.

This is very rare. I'm the only case my rheumatologist and liver doctor have ever seen.