Frustrated by zero results

Posted by jdnc2023 @jdnc2023, Mar 28 7:26am

Hi, I officially was diagnosed with seronegative RA in August 2023, after over 40 years of being gaslit and brushed off because of negative Rheumatoid factor. I was given prednisone, then hydroxychloroquine and now I'm on methotrexate. I have spent a lot of $ and have experienced zero improvement. It's pretty disappointing to have the risk and side effects but no benefits.
I imagine this is common. It's tempting to stop taking it and go back to how i was before diagnosis.
Do any of you have some words of wisdom? Thanks much!

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jdnc2023 | @jdnc2023 | Mar 29 10:43am

In reply to @dloos "I love this supportive community! Hoping the best for both of you❤️" + (show)

Me too! ❤ Thanks to everyone for being here!

rashida | @rashida | Mar 30 11:48am

@jdnc2023 you hit the nail on the head with: “ the risk and side effects but no benefits”! That has been so true in my case!

rashida | @rashida | Mar 30 12:03pm

In reply to @jdnc2023 "Yes. I was prescribed folate 1 mg daily. I did some extra googling and decided to..." + (show)

@jdnc2023 As far as I know you cannot take Methotrexate and Folic Acid on the same day - and the Methotrexate dosage should not be split. If you are doing that, it could be the reason for your nausea … perhaps …?

At any rate, let your rheumatologist know that you have been tweaking your dosages, and also that you have been taking folinic acid as well. Changes and additions you make could prevent the Methotrexate from working as it probably should or could, perhaps …

I was on Methotrexate for psoriasis and it worked great, although it was about six months before I saw results. It was the only medication that worked for me finally but I had to go off it after three or four years on it, because I have fatty liver disease and apparently it is not good for me to be on this drug long term because it could affect my liver.

But you are so right about medications just creating other side effects while having no effect on the condition for which they are prescribed! Been there, with other meds!

jdnc2023 | @jdnc2023 | Mar 30 1:10pm

In reply to @rashida "@jdnc2023 As far as I know you cannot take Methotrexate and Folic Acid on the same..." + (show)

Hi there! My doctor advised splitting the Methotrexate dose 12 hours apart to hopefully help avoid or lessen nausea. He didn't tell me to avoid folate on dosage days, but I read this on my own and have not taken it those two days. I took 30 mg the day before, and this week my nausea was less and only lasted a day. It was lasting a week previously.
I feel like maybe the dr doesn't read the latest research and is using old protocol. I'm not going to disclose to him that I'm experimenting on my self. He was critical of me using CBD oil for pain, stating one study said it might harm the liver. I thought this was rich, considering he was prescribing a well-known liver damaging drug. 😬
That is a shame that you had to stop taking what was working. I think I read that injections would bypass the liver. Was that a suggestion?

pb50 | @pb50 | Mar 30 3:07pm

In reply to @rashida "@jdnc2023 As far as I know you cannot take Methotrexate and Folic Acid on the same..." + (show)

Yea methotrexate (mtx) is hard on the liver. I kept trying to reduce mine enough to get my liver enzymes in check but had to stop pills and went to injectable form - but finally had to give up the drug altogether to protect my liver. ALT and AST were just too high. I was taking it as an adjunct to Enbrel so I just did without.

If you can’t tolerate the full
Dose of mtx in pill form, ask if you can switch to injectable. That helped me with the nausea.

pb50 | @pb50 | Mar 30 3:09pm

In reply to @pb50 "Yea methotrexate (mtx) is hard on the liver. I kept trying to reduce mine enough to..." + (show)

I think most Rheumy(s) opinion regarding folic acid and mtx on same day is they don’t really care. Some have the opinion that folic reduces effectiveness of mtx. But mine said it doesn’t matter.

jdnc2023 | @jdnc2023 | Mar 30 3:34pm

That's interesting. I have zero nausea this week after taking 30 mg of folicin on the day before and day after the MTX. I do believe there's something to it. The nausea previously lasted all week.

rashida | @rashida | Mar 30 9:21pm

In reply to @jdnc2023 "Hi there! My doctor advised splitting the Methotrexate dose 12 hours apart to hopefully help avoid..." + (show)

@jdnc2023 no, the injection was not suggested. I live in Ontario, Canada, and because we are on the government health plan the government decides what they are willing to pay. I have been approved for two injections - first Stelara and then Skyrizi, and both did nothing for me. Then my dermatologist applied for me to receive injerejected for two other injections and I didn’t “qualify” for either. Now I have been approved for Bimzelx and although it is working, I don’t know how it will affect my liver in the long run. Dermatologist says not to worry. 🤷🏼‍♀️

jdnc2023 | @jdnc2023 | Mar 31 5:39am

In reply to @rashida "@jdnc2023 no, the injection was not suggested. I live in Ontario, Canada, and because we are..." + (show)

Wow, I thought our system had a lot of hoops to jump through. I hope the latest treatment turns out to be safe and effective. 💙

pb50 | @pb50 | Mar 31 8:28am

In reply to @jdnc2023 "That's interesting. I have zero nausea this week after taking 30 mg of folicin on the..." + (show)

but your body doesn’t react forever with nausea. I took Methotrexate for years and had serious nausea only in the beginning months. I think there are other benefits from folic acid. I don’t take mtx any more. I am on Remicade infusions five years now. But the daily folic acid has helped - in combination with biotin - in arresting hair loss associated with both mtx and Remicade.