Wellness

[Sueliz]

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@Tinkrbl44 wrote:

I've recently had this dosage increased and coincidentally find my knees seem ...  weak.  I checked side effects and muscular fatigue doesn't seem to be a likely issue .....  I think.

My MD appt is next Monday, so I'll discuss it with her, but wanted feedback from anyone who might have experience.

So, I'm askng for feedback .... if you've taken this drug, did you have any side effects?

TIA !!!   

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@Tinkrbl44, I've been on it for 14 years and just had to switch to injections at a higher dose, Never had any side effects from it.

[tends2dogs]

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@judianne wrote:

My husband took it for a diagnosis of RA and ended up going to the hospital in an ambulance. It started with mouth sores after just 2 pills and then the tissue of his throat started coming off , the clinic from our town called the ambulance when they saw I him . The drug continued to cause tissues to be inflammatory and come off through his entire digestive system and he started rectal bleeding. He had 8 blood transfusions and after 10 days was able to come home. He nearly died from that stuff. By the way, he didn’t have RA after all , it was gout. 

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@judianne wrote:

My husband took it for a diagnosis of RA and ended up going to the hospital in an ambulance. It started with mouth sores after just 2 pills and then the tissue of his throat started coming off , the clinic from our town called the ambulance when they saw I him . The drug continued to cause tissues to be inflammatory and come off through his entire digestive system and he started rectal bleeding. He had 8 blood transfusions and after 10 days was able to come home. He nearly died from that stuff. By the way, he didn’t have RA after all , it was gout. 

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@judianne  I just have to ask, why did they think your husband had RA?  Did he have a high RA factor on his bloodwork?  What were his symptoms?  Thanks.

[Drythe]

I’ve had RA since a teen.  Have taken Methotrexate over 30 years.

Blood work for liver function, etc. every 3 months,  no cardio, etc. problems.

***Of note - of course as it is an immune-suppressant I’m more likely to get infections, if I catch your cold, it may develop into pneumonia, a small scratch may become infected.  So I have to be watchful.

That said, it has been very helpful in dealing with my RA, and taken in conjunction with Clinoril, has kept me from having to move up to any Biologicals, or more risky drugs.

WHERE are all those MDs who are pushing ‘those expensive new drugs’?

these drugs are both OLD school & cheap!  No one has ever suggested that I should move up ‘just because’.

That said I think you are best served to keep in close contact with your Rheumatologist.  Everyone can come up with apocryphal accounts, but you must be your own best judge.

[winamac1]

I'd take Enbrel or Humira or Cosentyx rather than MTX. 

I used to sell a biologic in this class.  MTX works, but it has so many adverse events.  

I do not sell in this class anymore.  But, I will tell you from knowing the data, one of them needs MTX on board to prevent antibodies from developing.  Another one can be used more easily monotherapy in RA.  Talk to your Dr. about this.  They will know.

If antibodies form, it can render the drug less effective. 

[GraceLady]

I am on methotrexate and have been for a few years.  I cocktail with hydroxychloroquine.  My liver is effected some, which is to be expected of course, but is kept within an acceptable range.  As stated by others, I have labs done every three months to keep an eye on my levels.  Keep in mind that MTX depletes your body of folate.  You must take folic acid, or (in my case, l-methylfolate) to replace it.  That is how you avoid the mouth sores and keep your liver levels in check.  I also had some hair loss after a few months, which is why I switched from folic acid to l-methylfolate.  Some people do not absorb manmade folic acid well, and do better with the natural form.  I am one of them.  That helped with my hair loss.  I shed quite a lot, but I still have plenty of hair.  It is used as a chemo drug, but in this case it is such a low dose, it is not a toxic dose like chemo is.  It takes 6-8 months to get the full effect of the drug, so be patient.  I didn't notice any positive effects for the first two months, but did slowly after that.  For me, so worth the wait.  You must report any mouth sores right away.  But if you are not taking folic acid, that is the reason.  BTW, my doc is at Stanford.  I have top notch care.  Good luck to you.

[Drythe]

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@winamac1 wrote:

I'd take Enbrel or Humira or Cosentyx rather than MTX. 

I used to sell a biologic in this class.  MTX works, but it has so many adverse events.  

I do not sell in this class anymore.  But, I will tell you from knowing the data, one of them needs MTX on board to prevent antibodies from developing.  Another one can be used more easily monotherapy in RA.  Talk to your Dr. about this.  They will know.

If antibodies form, it can render the drug less effective. 

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@winamac1

While I respect your opinion, my experience does not concur.  We are all different, and react differently.

I was in the first clinical trial for Embrel.  Two days after the 2nd injection I developed Shingles which went through my right eye.  I was immediately admitted to the hospital, and put on IV antivirals, (within hours of first symptom, no delay in treatment) it cost me the loss of 30% of the sight in that eye.

Everything has risks, I think the best we can do is make our own informed choices, and stay very diligent with our routine testing.

For myself, I choose to avoid biologicals.

[GingerPeach]

Has anyone on this thread with RA or similar auto-immune conditions heard anything further about this clinical test?  My rheumatologist had no updates, but maybe she is not well-connected?  Who knows?

  https://www.science20.com/catarina_amorim/rheumatoid_arthritis_can_new_treatment_spell_beginning_cur...

It was for a targeted remedy with little to no side effects.  (The latter part is always what draws me in.)

@Drythe @Tinkrbl44 @GraceLady @winamac1 @tends2dogs 

@twinkies  @abbalu   Sorry if I missed anyone.

I've taken MTX in the lowest dosage possible (7.5 mg per week) for the past several years, monitored with blood tests every few months, but have been taking a break since Christmas.  The main thing that seems to make a difference for me, drug or no drug, is food.  My body strongly tells me what it can tolerate.  For example, no nightshades (the big four are white potatoes, peppers, tomatoes, & eggplant).

ETA:  Is anyone familiar with Amy Myers and her Myers Way recipes, etc.?  She recently introduced a methylfolate product to her line, which I was prepared to ignore since I am skeptical of folks pushing their own line of supplements.  However, now I'm intrigued due to @GraceLady bringing up the methylfolate issue.

[Drythe]

Thanks,  I’m going to read further.

[Calcgirl]

I have been on Methotrexate ( 8 tablets once a week) for 19 years. The doctor told me to take folic acid , one per day to help with hair loss. I have never had any side affects and have a healthy amount of hair. It definitely has helped me keep RA under control. I gave up all artificial sweeteners and diet pop. Boy has that helped! After stopping I went from intravenous form to pill form and seldom have flare ups.

[GraceLady]

@GingerPeach  I read the article and have not heard anything about it.  I will ask my doc the next time I see her, however.  I will never go into remission, so I would love to know there is some hope for autoimmune sufferers.  While I do not have RA, I have three different autoimmune diseases that could potentially benefit.

Regarding diet, I was put on a very strict elimination diet just over a year ago.  I became physically ill as my body detoxed from food.  I had physical body pain, like the body pain I have during a flair, but much worse.  Reintroducing food is a very slow process, waiting for reactions.  Nightshades were singled out as foods to eliminate on the diet.  I felt so much better after that detox period, so much less pain and inflamation, that I have decided to stay gluten free.  I sneak a little every few months to check my reaction, but I have never felt perfect after eating it.  I have chronic migraines as well, and they have improved since I stopped eating gluten.  I was tested and am not celiac, probably just gluten sensitive.  I am caffeine free, limited dairy (though should probably eliminate all together), and have cut out sugar.  And I avoid the whites (white rice, white potatoes, etc.) which were on the diet.  Honestly, I never reintroduced all foods because I feel so much better.  I am happy where I am.  Now if I treat myself to a little dessert once in a great while, it is not so bad.  I am healthier all around.  I also know what I can eat without it making me flare.  The diet was well worth doing.

I have seen Amy Myers book, but haven't read it.  I think you can tell from above that I support an anti-inflamatory diet.  Her methylfolate supplement has other vitamins/supplements in it.  I couldn't give an opinion about it.  I purchase mine online from a site my doctor recommended, MethylPro.com.  It comes in different dosages.  Amy Myers says to take 1-2 daily but I did not see the amount of methylfolate per dose.  I am instructed to take one 2.5 mg capsule daily.  I don't know if the dosage goes by weight, or by the amount of MTX you take, or something else.  You would have to check with your doctor.

I take other supplements for inflamation, always recommended by my doctor.  Hope I have helped.