ET and RA: Hello everyone, haven’t been on here... - MPN Voice

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ET and RA

Jynx93 profile image
27 Replies

Hello everyone, haven’t been on here for a while. I’ve been trying to sort things out after being told I now have RA too. It’s been a long process for consultants to find any medication I can take as I can’t take the standard prescribed RA medication as it interferes with others I’m on. I also have Epilepsy, Diabetes and COPD. Lucky me, but I’m still standing 😁

I’ve been put on Adalimumab and was interested to know if anyone has experience of taking it with peg interferon and if they have any side effects and have found a way to inject the pen without it being horrendously painful. I’d much rather have my peg jab, I have no problems at all with that, I don’t even feel it most of the time. Thank you in advance for any response.

Hope you are all doing well, keeping fit and healthy.

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Jynx93 profile image
Jynx93
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27 Replies
hunter5582 profile image
hunter5582

It sounds like you have a medically complex case. A high level of collaboration will be essential between your providers. Suggest you review the information you receive from the forum with your entire team to ensure you cn explore all options and make the best decisions.

Here is some information from ePocrates.com.

These two cautions show for adalimumab

caution: myelosuppression

caution: myelosuppression hx

No interactions show between Pegasys and adalimumab, but additional considerations do appear for both drugs.

Additional Considerations adalimumab in Humira caution advised w/ narrow therapeutic index drugs; chronic inflammatory conditions may alter metabolic enzyme formation; tx w/ immune modulators may reverse this effect, resulting in altered levels of concomitant drugs

Additional Considerations peginterferon alfa 2a in Pegasys when used to treat HCV, caution advised w/ narrow therapeutic index drugs extensively metabolized in the liver; viral eradication may improve hepatic metabolic function, decr. levels, efficacy of concomitant drugs

It appears that some forms of adalimumab come in either an auto-injector pen or a prefilled syringe. I suspect the syringe form would be more like the PEG injection.

I have previously seen some indications that the JAK inhibitors (e.g., Jakavi) that are used to treat MPNs may also have efficacy for RA. You may want to learn more about this. thearthritisconnection.com/....

I expect you will get some good feedback and information. Please do let us know what you learn when you review it all with your care team. Meanwhile, wishing you all the best.

Jynx93 profile image
Jynx93 in reply to hunter5582

Thank for the reply.

I had Palindromic Rheumatism for about 10 years and then being really unlucky in the health department I was one of the 50% of people that progressed to RA. Haematology and Rheumatology are keeping a very close eye on things and have constant meetings about me. Having bloods done every 2 weeks. Nothing but needles ☹️ Still on steroids at the moment so won’t know for months if all this treatment will work or cause further problems. Time will tell.

Jynx93 profile image
Jynx93 in reply to hunter5582

emails and meetings galore between departments about me. They are keeping a good eye on me and communication is good, that’s reassuring. Stay well.

EPguy profile image
EPguy

I'm with you on the complex case, autoimmune condition with MPN treatment. MPNs are a risk for autoimmune troubles, and IFN is likewise, severe in rare cases (count me in). You can see my detailed posts if you're interested.

I have likely Sjogrens, one of the rheumatological conditions associated with IFN, and a misc mess of other neuro etc troubles. In my case it was apparently triggered by the flu vaccine while on IFN.

Your RA was Dx after starting PEG, is that right? You'll want to track the RA closely. My mistake was continuing the IFN after a sudden deterioration.

--

I'm now on Rux. And conveniently Jak inhibitors are just recently being studied for autoimmune conditions.

Hunter's link shows some Jak-is that are approved now.

Another sample of one report addressing Rux, the Jak-i relevant to us:

"At week 12 of the 52-week trial, patients taking baricitinib (a Jak-i noted in Hunter's link) were significantly more likely than patients taking placebo or adalimumab to have an ACR20 response."

and

"Patients treated with ruxolitinib were more likely to achieve ACR20, ACR50, or ACR70 than patients taking placebo. The ruxolitinib arm also showed greater improvement in HAQ-DI scores after 4 weeks. “Ruxolitinib, which has significant activity toward JAK1/JAK2, may ultimately join tofacinitib [as a treatment for RA"

rheumatologyadvisor.com/hom...

So this one report points to a Jak-i being more effective than adalimumab for RA. This doesn't mean it's a fit or an option for you but worth discussing with your Dr in that it might treat two of your conditions.

Jynx93 profile image
Jynx93 in reply to EPguy

Thank for the reply. Rubbish having several complex health conditions isn’t it. RA has progressed from Palendromic Rheumatism which I had for the previous 10 years.

EPguy profile image
EPguy in reply to Jynx93

Agree on that. Going from a 20 something-like to the old man I really am in just three years is so sad.

2 week bloods, they are really watching you, that is nice to know. RA does have many treatment options, just as our MPN options are also growing.

mhos61 profile image
mhos61

Hello Jynx93.

I have ET and my hubby has RA, so not quite the answer you were looking for. However, what I would say is I really hope your Rheumatologist and haematologist are in close collaboration going forward in your healthcare plan. You will need it!

Your case is complex. If you’re not already under the care of an MPN Specialist I would suggest you consult with one. It is a known fact that MPNs and Interferon can independently trigger autoimmune disease. It’s not for me to say interferon is the cause, but it would be savvy to be at least suspicious. Only an MPN Specialist will have the key knowledge and expertise to evaluate your case and professionally guide you.

As others’ have noted the Jak inhibitors are used to treat MPNs (Ruxolitinib) and RA (Barictunib and Tofactitinib), which my husband has been on during the course of his RA disease. He has also been on the anti TNF drug that you are currently taking. I can’t remember him being particularly bothered by the injection, he pinched a bit of tummy fat between his fingers and plunged in the pen - different sides each time. He hates needles, so take some comfort in that…

EPguy profile image
EPguy in reply to mhos61

Agree on the rare trigger, including MPN+IFN+vax

Has your hubby been on both the TNF and Jak-i's at the same time? Any evidence one helps more than the other for him?

Jynx93 profile image
Jynx93 in reply to mhos61

It doesn’t seem to matter which way I use this pen it hurts like hell, might have to ask for the syringe instead. Lost 2 stone since being on Peg so don’t have a lot of fat to pinch. 🤣 I was pretty small to start with

mhos61 profile image
mhos61

No, not at the same time!

In the course of his disease, he has tried various biological therapies, Humira (anti-TNF) Rituximab and Tocilizumab.

The Tocilizumab showed great promise but caused a severe uti with significant damage, so back to methotrexate and low dose steroids.

After a five year break from the biological therapies he then tried the Jak inhibitor, barictinib. This was very successful in controlling the disease. However, it was short lived due to another severe uti infection, probably now a propensity to uti due to the damage from the Tocilizumab. So, his rheumatologist quite rightly determined this treatment wasn’t suitable for him. He’s now back on methotrexate and low dose steroids again.

EPguy profile image
EPguy in reply to mhos61

mhos:

That is frustrating to have a fix but be forced off it, I can relate. It does support the recent trend in Rheum toward the Jak-i's. But also points to the need for really close monitoring of infections. In my case excess IFN dose may have been part of it the problem, maybe this applies to the other therapies too.

It seems all these agents can cause uti's but it's hard to compare between them. Esp some studies include lower grades while your hubby had high grades.

Is he doing ok on the current therapy?

I'm now in an unofficial experiment of Rux for Sjogrens.

mhos61 profile image
mhos61 in reply to EPguy

Yes, it really sucks. And totally agree on close monitoring, but also effective decision making.

With the Tocilizumab blood tests were always taken immediately before infusions to check on neutrophil counts. He had been doing well. There was some debate on that last infusion prior to the severe infection, as we both remember the doctor coming onto the ward to ask him if he felt alright. That never happened before, hubby said yes, and the go ahead for the infusion was given. The damage was done, and it was pretty severe.

He’s doing ok on the methotrexate and steroids, but they don’t halt/control the disease as well. Lots of joint damage.

Hope you find success with Ruxolitinib. Have you been given a clear diagnosis of Sjogrens or is it still presumed at this stage? My hubby has ‘dry eyes’ ‘restless leg syndrome’ all related to RA. His GP refused to call it Rheumatoid Arthritis and used the term Rheumatoid Disease due to the systemic involvement. Smart doctor!

EPguy profile image
EPguy in reply to mhos61

With that sort of precaution it does seem Tocilizumab is a high tension med. Must be there was an abnormal reading, did Dr ever follow up on that? I also relate to damage is done, for me it was the flu vax. I think high active glutathione is also toxic for me as a recent dose was adverse and has brought me down more.

It seems pills are less likely to cause instant permanent damage than injections.

Same for Jynx93 of the top post here, finding meds that work nicely can be really hard.

I have rheum appt tomorrow and will discuss it further. All my autoimmune bloods are good, except the one for Sjogrens (SS-a). Symptoms also point there, but there seems to be something else making trouble too. Another bad lottery ticket, Sjogrens is 9/1 female.

mhos61 profile image
mhos61 in reply to EPguy

I’ve sent you a pm

Jynx93 profile image
Jynx93 in reply to EPguy

good luck with your Rheumatology appointment, hope they sort you out. Stay well.

EPguy profile image
EPguy in reply to Jynx93

I'm Dx of Sjogrens now. This has no approved treatment.

The Dr confirmed the jak inhibitors are working well for RA for many. From your top post, these are not available to you. Does that also include Rux as off limits?

Jynx93 profile image
Jynx93 in reply to EPguy

Thanks for the response. I am on a lot of different medications and so they decided that the ones they have prescribed are the least likely to react with others. There were a fair few meetings between departments trying to find something safe I could actually take. 🤞 it works.

Mishie14 profile image
Mishie14

my goodness you have a complex situation. I have no experience to share but for MPN. I wish you the best the experts can offer to provide you with relief. You are in my thoughts and prayers. Stay strong!

Jynx93 profile image
Jynx93 in reply to Mishie14

Thank you very much for your thoughts

KLCTJC profile image
KLCTJC

I think there are a lot of us with additional health problems that makes us complex. I think I am the only one with PV and MS. In my case hoping INF works for both. Mine is super odd and extremely rare as no one else I can find with both. The advice I can give you is from experience of prescribing Humira. Definitely let it sit for 15mins before giving, do not give in the thigh, and make sure you have the citrate free version. I thought they changed all of them but I would double check as that is kind of a new thing in the last year or so. Hope this helps!!!

Jynx93 profile image
Jynx93 in reply to KLCTJC

Thanks for the advice about not giving it in the thigh, I found out the hard way. Mine is not citrate free either. It seems to hurt like hell wherever I put it. Have no problems with my peg injections I don’t even feel it most of the time. I have just asked to change from pen to injections with the Adalimumab.

KLCTJC profile image
KLCTJC in reply to Jynx93

Ask them about the citrate free version. It will likely help a ton! The last time I saw the rep I thought they said they were changing all of them to it, but you may have the older version. I hope this helps!

Jynx93 profile image
Jynx93 in reply to KLCTJC

Thanks for the input. I’ve asked to change to injections instead, see how I get on with them. Still have to use the 4 pens I have left though ☹️

saltmarsh profile image
saltmarsh

Jynx - reading your post suggests to me that you have a positive attitude and the strength to get on top of this. I'm sorry I can't add anything except my best wishes for good results on this journey. Very good luck as you move forward.

Jynx93 profile image
Jynx93 in reply to saltmarsh

Thank you for your best wishes. I can either sit and cry about the situation if I thought about it too much or just get on with it. I won’t let it get the better of me. Still working 2 jobs so not bad for my 60’s. Stay fit and healthy yourself.

Wyebird profile image
Wyebird

oh dear you have a lot of battles to fight I can’t help but wishing you all the best

Jynx93 profile image
Jynx93 in reply to Wyebird

Thank you. I think all of us are fighting a battle with an MPN. Stay healthy everyone.

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