Need advice please.

[Amandakmk]

I have been diagnosed with crohns last year , I started Humira in June 40mg I have to a of joint pain , more gastro flare ups recently really bad this past Friday . Now I have breast pain that runs up my arm pit and shoulder along with really itchy blisters that are in clusters up the palms of my hands . I got a steroid shot and it cleared up but has since come back full force . I am currently taking folic acid , 50000 iu of vitamin d , and birth control for hormone levels. My doctors all send me to the next dr and I just don’t know what to do it seems each week brings up something new . Also I have a lot of pain at my toes and bottom of my feet. Along with those blisters at the tips of my big toes . Anyone else experience any of this?

 

[gotumtum]

There is a group of virus' that can cause blisters on hands and feet - and sometimes mouth - but people usually get them in childhood. - You can get it more than once because there are more than one virus that causes it - Hand Foot and Mouth - totally different to the foot and mouth that cows get. As an adult you may be getting hit harder than a child - or because of Humira? Some kids get a really mild course, and others really bad.

 

[Amandakmk]

I do t know what this is but it’s on my palms and looks like I have burnt my hand . The dr said it’s probably due to crohns I have no clue but it’s painful

 

[gotumtum]

Perhaps you could ask the dr for the name of the condition next time you go. Sharing the name of a the condition might help jog peoples memories. Also - have you seen a dermatologist?

 

[Amandakmk]

I will definitely ask and post , and no I have not seen one yet . I’m thinking it maybe a pretty good idea at this point

 

[Amandakmk]

So I now have eczema on my hands and feet due to stress the creams don’t work and it’s very painful. On another note, I had a colonoscopy again and there is slight improvement but all inflammation still there . The pain in my joints has worsened and my crohns has gotten worse so my dr ordered another MRI to see if I have it anywhere else. They also said to start mexthrotxate, which I did and three days into it some relief in joints but lots of nausea and diarrhea. I take injectable mexthrotxate .4 so very low dose but am having a reaction so they said do not take any more . Don’t know what’s next now

 

[my little penguin]

So for mtx you did one injection and had bad side effects afterwards ?
What was the dose ?
Since the vials could have different concentrations ?
Ds has tried mtx by injection made him have nausea and flu like symptoms horrid
Then he dropped it
Two years later tried oral pills
Had some nausea but not as bad
Took the pills at night and upped his folic acid to 1 mg twice a day every day and took it in the form of folate .
Found out he can only take up to 20 mg of mtx
Tried injections again
Got really sick
Even added lecovorin ( rescue drug taken 12-24 hours later to help with side effects )
So he went back to oral pills taken once a week at bed
Yes he gets looser stool (not diarrhea the day after and nausea the day after ) but he takes it at night so he sleeps through most of it

it stops the joint damage when combined with Stelara for him

there is

Leflunomide (Arava®)
Leflunomide is also an effective DMARD. Its efficacy is similar to methotrexate in terms of signs and symptoms, and is a viable alternative to patients who have failed or are intolerant to methotrexate. Leflunomide has been demonstrated to slow radiographic progression. Studies have demonstrated that it can also be carefully combined with methotrexate in patients with no preexisting liver disease, as long as the liver function tests are carefully monitored. Leflunomide has also been studied in psoriatic arthritis with some efficacy demonstrated.

Mechanism:

The mechanism of action of leflunomide is not fully understood but may be related to its ability to inhibit de novo pyrimidine biosynthesis through the inhibition of the enzyme dihydroorotate dehydrogenase. Laboratory studies have demonstrated that it also has effects on stimulated T cells.

Dosage:

The half-life of the active metabolite of leflunomide is very long. Leflunomide and its metabolites are extensively protein bound and undergo further metabolism before excretion. When initially approved, the medication was given using a loading dose of 100mg daily for three days then followed by 20 mg daily. Due to a significant incidence of GI side effects and diarrhea, most practitioners now use a shorter loading period with lower doses or initiate treatment at 10-20 mg/day with no loading dose,. The dose may be reduced to 10mg daily if not tolerated at the 20 mg dose.

Usual Time to Effect:

The onset of action is relatively rapid within 4-8 weeks. The onset of action of Arava may be seen earlier than methotrexate when using a loading dose.

Side Effects:

Leflunomide has been associated with liver transaminase elevations that reversed with cessation of the drug in clinical trials. Routine monitoring should include complete blood count and hepatic panel more frequently at the beginning of therapy then on a regular basis (at least every 2 months). Other toxicities that are common include mild diarrhea, GI upset and alopecia and hair thinning sometimes of sufficient severity to cause cessation of the drug.

Because leflunomide and its metabolites are a teratogen, extreme care must be taken for treatment of women of child bearing potential. Women must be warned about the possible risk to the fetus and cautioned to use adequate birth control. Women wishing to become pregnant must take cholestyramine 8gm 3 times daily for 11 days and then have two leflunomide metabolite levels drawn 14 days apart to document serum concentration less than 0.02mg/L. Leflunomide treatment does not appear to be associated with an increased risk for infection.

From
https://www.hopkinsarthritis.org/arthritis-info/rheumatoid-arthritis/ra-treatment/#lefl
A friend of mine had to switch her kiddo with arthritis to that one

 

[Amandakmk]

So for mtx you did one injection and had bad side effects afterwards ?
What was the dose ?
Since the vials could have different concentrations ?
Ds has tried mtx by injection made him have nausea and flu like symptoms horrid
Then he dropped it
Two years later tried oral pills
Had some nausea but not as bad
Took the pills at night and upped his folic acid to 1 mg twice a day every day and took it in the form of folate .
Found out he can only take up to 20 mg of mtx
Tried injections again
Got really sick
Even added lecovorin ( rescue drug taken 12-24 hours later to help with side effects )
So he went back to oral pills taken once a week at bed
Yes he gets looser stool (not diarrhea the day after and nausea the day after ) but he takes it at night so he sleeps through most of it

it stops the joint damage when combined with Stelara for him

there is



From
https://www.hopkinsarthritis.org/arthritis-info/rheumatoid-arthritis/ra-treatment/#lefl
A friend of mine had to switch her kiddo with arthritis to that one

I had stomach upset every time I ate and heart burn , and I felt like I was drunk it was so weird feeling, I took some zofran which eased the sickness but still felt weird I had the injection .4 ml which I think was 10mg very modest dose

 

[TechnoMan]

I don't know what it is, but I sincerely sympathize with you
I want to say that you are great for talking about this. I also have strange symptoms, but I'm not ready to write and ask for advice. It's too difficult
I hope everything will be okay. Sorry for unuseful comment

 

[Amandakmk]

You are perfectly fine , I got on this forum because my dr recommended it would help if I found one. I just want answers as to what and why all this is going on. It’s crazy but everyone on here is very nice and helpful

 

[Lady Organic]

is the eczema better? and the IBD status?
I suffered a lot from eczema when I was a child (big patches inside my elbows and behind knees) and then it subsided, a bit on my hands in teenage too. My skin now remains the dry type though and can itch easily if too dry.
Do doctors think Humira could be the trigger of this new condition of yours? I have this in mind reading your story, since you started Humira last year and never had eczema before. Seems like it could maybe be a possibility.

 

[CatLover63]

is the eczema better? and the IBD status?
I suffered a lot from eczema when I was a child (big patches inside my elbows and behind knees) and then it subsided, a bit on my hands in teenage too. My skin now remains the dry type though and can itch easily if too dry.
Do doctors think Humira could be the trigger of this new condition of yours? I have this in mind reading your story, since you started Humira last year and never had eczema before. Seems like it could maybe be a possibility.

Hello, thick fog again this morning in London so my planned shopping trip is cancelled. Asthma and fog don't mix well. I've had mild eczema on my elbows as an adult and the GP thinks it's stress related. I have allergies to latex, dust, pollen, fur and milk doesn't always agree with me. Prescribed E45 cream and stopped using bubble baths as too drying for the skin.

 

[FDK80]

My advise to you is to do full check ups, because your Crohns might not be "fully" under control. If that's the case, maybe your doctor will reconsider your medication plan.

CD is vey strange disease and it effects everything.

Cheers.