1. < Autoimmune Diseases

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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pb50 | @pb50 | Mar 31 8:41am
In reply to @jdnc2023 "Hi there! My doctor advised splitting the Methotrexate dose 12 hours apart to hopefully help avoid..." + (show)
@jdnc2023

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?

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They bypass the GI absorption which is directly processed by the liver. I was able to stay on the drug much longer after I went with weekly injections.

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rashida | @rashida | Apr 1 1:48am
In reply to @jdnc2023 "Wow, I thought our system had a lot of hoops to jump through. I hope the..." + (show)
@jdnc2023

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. 💙

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@jdnc2023 Bimzelx seems to be working for my scalp psoriasis but how safe it is, remains to be seen.

I am getting four, monthly injections and then will be taking injections every twelve weeks. I go for my third, monthly injection on Tuesday. My fourth injection will be in May. Each dose is two injections.

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1 reply
rashida | @rashida | Apr 1 1:57am
In reply to @pb50 "but your body doesn’t react forever with nausea. I took Methotrexate for years and had serious..." + (show)
@pb50

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.

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@pb50 are you still taking the folic acid after stopping Methotrexate? In Canada you need a prescription for folic acid (the higher dose which is needed with Methotrexate) so a doctor would not give a prescription for it if you are no longer on Methotrexate.

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pb50 | @pb50 | Apr 1 6:52am

Well folic acid is prescribed for a variety of indications - not only to mitigate side effects of methotrexate. So yes I am prescribed 5mg a day by my rheumatologist. In the US it is considered to be a supplement by Medicare/Medicaid and they don’t pay for it. And in fact you can buy it over the counter at the pharmacy or on Amazon.

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jdnc2023 | @jdnc2023 | Apr 2 7:10am
In reply to @rashida "@jdnc2023 Bimzelx seems to be working for my scalp psoriasis but how safe it is, remains..." + (show)
@rashida

@jdnc2023 Bimzelx seems to be working for my scalp psoriasis but how safe it is, remains to be seen.

I am getting four, monthly injections and then will be taking injections every twelve weeks. I go for my third, monthly injection on Tuesday. My fourth injection will be in May. Each dose is two injections.

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Fingers crossed that it works with minimal side effects 🤞🥰

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pb50 | @pb50 | Apr 2 5:59pm
In reply to @jdnc2023 "That's interesting. I have zero nausea this week after taking 30 mg of folicin on the..." + (show)
@jdnc2023

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.

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True but that only impacts nausea - a side effect. The debate was whether taking it in relation to when mtx is taken has an impact on mtx effectiveness.

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jdnc2023 | @jdnc2023 | Apr 2 6:59pm

I have read some opinions that state it doesn't affect the MTX effectiveness and others state that it does. I'm skipping it on MTX day/s just in case it does. The NHS recommendations are quite strongly worded to avoid it on MTX days. Hopefully it will continue to help the nausea. I have an appointment next Wednesday and I guess the doc may up the dose. He may not want to switch meds yet, and I'm going out of town the following week and it may not be wise to switch in case I have a reaction to another med.

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bonniefielding | @bonniefielding | Apr 4 10:27am

I have a question - are you on a statin for high cholesterol? I have some of the same problems and I stopped taking my Lipitor and within a week everything calmed down - I feel so much better - just a thought....

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1 reply
jdnc2023 | @jdnc2023 | Apr 4 11:26am
In reply to @bonniefielding "I have a question - are you on a statin for high cholesterol? I have some..." + (show)
@bonniefielding

I have a question - are you on a statin for high cholesterol? I have some of the same problems and I stopped taking my Lipitor and within a week everything calmed down - I feel so much better - just a thought....

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No, I'm not taking any other meds. I'm glad that stopping Lipitor helped you!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 5 5:39pm

Here are some related discussions that may also interest members talking about polymyalgia rheumatica (PMR) and seronegative rheumatoid arthritis (RA):
- "Evolution" of Seronegative RA into PMR: https://connect.mayoclinic.org/discussion/evolution-of-seronegative-ra-into-pmr/
- Do you have PMR or Seronegative RA?: https://connect.mayoclinic.org/discussion/do-you-have-pmr-or-seronegative-ra/

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