Can I resist the Methotrexate ?

[katieb]

Hi Roadbackers !!

Well, I finally got my positive diagnosis of RA from the rheumy on Monday (wow!!!). I told her I was already on the mino, and she sighed and said it wouldn't bring down the inflammation fast enough and wants me to start on the mtx as soon as I've had all the necessary tests, chest x-ray etc. However, she is quite happy for me to remain on the mino, as the 2 drugs don't interract.

I have a couple of weeks to think about this as I am off on hols from next Sat for a week.

She offered me a cortisone shot to last 6 weeks, to enable me to enjoy my holiday, and 'tide me over' until the mtx kicks in, which I accepted (always a wimp). 😕 So I expect that is why I am feeling relatively good today, although my knees had already started to get better. 😀

My dilemma is, would the mtx do more harm than good, if perhaps I was only on it for a short while? Would it stop the mino from working so well? A reply from marg on a previous topic of mine ('All happening so fast') tells how her daughter had mtx for 3 months to bring down her inflammation, then successfully switched to mino and did very well.

Help – what do I do !?!?!

Katie 🙂

[JOJO19551]

My rheumy wanted me to take the same but I opted not to.  It takes 6 momths to work and suppresses your immune system.  I am showing improvements in my sd so I am sticking with the mino.  If you take different drugs, how do you know which is working and which you should stop taking.  I at least feel safe taking mino.  Hope this helps.  Good luck, JoAnn

[superperroRA]

Just saw somewhere else that you have already taken ibuprofen and a COX2 NSAID. Here are the usual choices (concurrent with AP)

advil
Celebrex or Mobic
prednisone at small doses like 5mg
methotrexate
biologic

You can combine some of the above.
For example, (5mg prednisone +2 celebrex) daily

Methotrexate is very toxic and it suppresses the body's immune system greatly, which brings AP to a crawl.

Biologics increase your chances of developing cancer.

Prednisone is hard to quit. It can give cataracts, glaucoma, diabetis, osteoporosis,etc. if taken at large doses (>10mg) over long periods (>6 months) of time

[John McDonald]

Katie,

You don't have to take any med that you don't want to take. It is remarkable how firmness with your doc can work sometimes. MTX does take a long time to work so it won't give you much relief for a month or even months. I would refuse MTX. Knowning what I know now, I wouldn't combine the Minocycline with any other DMARD unless I was already on one when I arrived at AP, as I was, UNLESS I did so as a sop to my doctor. And then I wouldn't choose methotrexate, I would choose plaquenil or sulfasalazine which are less onerous. But frankly, knowing what I know now I would just leave those DMARDS and stick with Mino. I would remind doc that it is listed as a DMARD on the American College of Rheumatology website and that I want to give it a chance before I try another med. That would be my choice. You have to pick your own way through this conflicting information between your doc and Doc Browns AP.

Good luck,

john

 

[katieb]

Hi JoAnn, Superperro & John

Many thanks for these helpful posts. If mtx reduces AP to a crawl (and that's even slower than 'glacial'!) than no way do I want to be taking both – you have all managed to talk me out of that.

I guess what I'm really after is everyone to start yelling 'I took it but my hair fell out/I felt ill all the time/I kept catching bugs, and my joints didn't improve much either'. :sick:Well Patti's post (on the 'RA – newly diagnosed' topic) about what the mtx did to her hand has pretty well convinced me !!

I think it's just that I've been feeling pretty bad recently – herxing or whatever – and you always hope, don't you, that some drug will work a bit faster to make you feel better. I'm glad to hear that mtx doesn't work very fast either.

I guess you alway think too, don't you, that perhaps your own illness is too severe and that the AP won't work fast enough to prevent joint damage.

Anyway, I know I just need to find pain relief that works for me until the AP brings its own relief.

This rheumy has given me an IM corticosteroid shot which is partly to enable me to enjoy my vacation, and I must say I feel so much better already even though that was only 2 days ago. It is meant to last 6 weeks. So hopefully that is going to counteract the effects of the herxing for a while. I guess after that wears off if I really need to I could try the low dose prednisone.

My willpower just needed a little boost from you guys to 'fight off' that rheumy !!!

I'll take that tack which you suggest John – that as minocin is an accepted DMARD, and the least toxic, that's the one I'd like to try first.

Thanks again,

Katie 😀

[John McDonald]

I guess you alway think too, don't you, that perhaps your own illness is too severe and that the AP won't work fast enough to prevent joint damage.

It is unbelieveable how many roadblocks your own mind will toss at you. Most of us can stifle down the fear that we recognize, but the pain of RA is such that the fear seems to come from a more fundamental, more primitive place in the mind.

Years ago I broke my hip and walked on it for 3 months before I recognized that maybe I should see an orthopod. It took surgery and 4 screws to fix it.  No fear on that one. But it took about 2 years of remission, of being pain free before I stopped cringing if I thought that pain was returning. I promise you, you will get better and along with the pain, even these inane fears will ebb away.

[lynnie_sydney]

I agree with John, Katie. The DMARDS all take time before they kick in. Even the sulfasalazine that I was on took about 4 months. So, your doc may have sighed, but (truthfully) it is unlikely that it was about timing for bringing down inflammation. So you will not be getting pain relief any time soon from them. Sounds like she was 'humouring you' because she doesnt beieve in AP. If it were me, I'd be using what I could for pain relief (i.e. small amount of pred etc) to bring inflammation down. And, again to agree with John, I'd try taking a firmer hand with your doc. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[caroline]

I am taking Plaquenil (thanks to John MacD's suggestion) which is far less
toxic than Methotrexate . NO problem with it for me, it has been around a long time. My opthamologist said that in 35 years of
seeing eye patients who were on Plaquenil, not single problem
occurred. But you would have to monitor your vision for blurriness & if
that occured, stop taking it immediately. Even with my past history of Iritis, my opthamologist OK'd Plaquenil (which has a generic). Plaquenil takes 2-3 months to affect inflammation. Opthamologist was negative on Methotreate. So meanwhile, I am taking Metagenics Ultra InflamX to reduce inflammation. Check out their website.

You can use the search button above to read details about Methotrextate,
Plaquenil & Sulfasalazine. Personally, I had hideous drug allergy after
beginning Sulfasalazine & so did someone else I know. I would inquire
about drug allergy tests (ALCAT.com) before taking any strong medication.
People tell me that Methotrexate is given to people with cancer but
my cousin developed lymphoma after being given Methotrexate for RA,
At the City of Hope in Duarte, California…..her oncologist expressed the
view (not a formal medical study) that Methotrexate was linked to lymphoma.
You have choices. Do not make a decision until you feel more sure of
the factors driving your choice.

Towards Healing for All,
Caroline

[Texas T.]

I took MTX for 4 months before I found a Dr. to prescribe Doxy for me on August 21, 2007.  As the others indicate, it takes MTX about 4 months to “do it's job”.  During that entire time, my right ankle was reddish/purple from the arthritis. 

11 days after beginning the Doxy – the discoloration was gone and has never returned. 

As I was already on MTX and Prednisone before I started Doxy, there was about a 1 month overlap of the 3 meds.  I was off MTX by October 21st and off the Prednisone by September 21st.

I'm now 11 months into AP on Doxy.  I still take Feldine every day and am hoping to get off that too some time.

Like the others who responded, I would take the Prednisone in small amount and skip the MTX.  Let the AP do it's work – it does take a while to “kick in” – but so does the MTX.  The good news is the AP won't “kick you” but will kick the arthritis.  The MTX can kick your liver – then you'll be in worse shape than you are now.

Enjoy your vacation – and here's to better days ahead on AP.

[Joe M]

[user=26]superperro(RA)[/user] wrote:

Biologics increase your chances of developing cancer.

Actually the book is still out.  There are just as many studies that show no correlation between biologics and cancer as there are that do show a connection.  One reason the studies are inconclusive is that people with RA have about a 40% greater chance of developing cancer than the general population, drugs or no drugs.  This has been known long before the first biologic hit the market. 

Regarding time to effect, most dmards do take a while to work, but some are better than others.  From rheumatology.org:
“Biologic agents usually work quickly to relieve the symptoms and swelling associated with rheumatoid arthritis. Although the studies show that most patients will improve within 4-6 weeks of treatment, most patients receiving Enbrel, Humira, or Remicade will notice marked improvement after the first or second injection.”

Our experience was similar, and some people report that biologics work in mere days after the first injection.

I agree however that methotrexate is bad news, and would be last on my list of drugs.

Good luck and hope you feel better soon.
Joe

[Michele]

Hi Katie,

Hair falling out from mtx???…indeed yes!

Oh that methotrexate question weighs so heavily on my mind I have to say something. That's what made me run screaming from the rheumies office and straight into the laps of RBF. Okay, I'm exagerating, but hairloss is definitely a side-effect along with liver problems. And don't forget the possible lung problems…that was really what made me avoid MTX.

I have a friend dx-ed with RA a week before my dx. She chose methotrexate and prednisone. Her hair is significantly thinning and she's always nauseous from the methotrexate. She's been sick numerous times and has gone off of her medicine to recover from illnesses. She can't back down off her prednisone because her arthritis flares too much. It's almost a year later and she's still losing too much weight.

Another person I talked to before deciding mino vs. methotrexate was on methotrexate and was recovering from pneumonia. Ugh. I didn't talk to anyone who “liked” methotrexate. A relative was given MTX for RA and later found out she really had Lyme!!! Another woman told me it was like having morning sickness a couple days a week. :sick: Been there, done that, and with the outcome of twins to enjoy for suffering that nausea. :roll-laugh:

At first, I chose AP / Plaquenil / low dose prednisone, but was a rarity and had big trouble tolerating Mino. I also couldn't tolerate prednisone. Actually, I now know my immune system wasn't that blocked and a little bit of minocin flared me into a hypersensitive state. Because I really believe in this disease having a bacterial cause I wanted to get the mino to work for me so I then moved to MP and added Benicar. My hair stopped falling out and started regrowing when I started Benicar. (Yes, my hair was falling out with prednisone and plaquenil.) I had a little nausea for about 2-3 days and fatigue for a month or so. But within a few weeks on Benicar alone, I was getting around better and this week (month 4 on MP) I've been walking at least 1 1/2 miles every night, wrestling with my boys, and ta da…playing my instrument again. I don't want to jinx this, but I'm playing again. I play one of those hard to play woodwinds…can anyone guess it? I don't want to commit to a professional performance yet, but the MP has really changed things for me. Instead of taking 3 mg of mino and competing with Jennhere to be the biggest baby on the RA playground, I'm in big-kid land and up to 75mg of mino. The best part is tolerably herxing!!! What a relief!!! And many of you will recall I was begging for info for pain relief. Benicar has gotten the inflammation / pain so under control, I very rarely take any pain medicine. Like 1/2 a vicodin once in two weeks. The herxing is in the same locations, but tolerable. Right now I have a lung herx underway, but I was still able to walk and practice a wind instrument tonight. Yes, I am pleased…and tentative to say something lest my trajectory change directions. My overall outlook is now positive. I have been smiling and laughing again. Life is a treasure and I know each day is a gift. I marvel at each pain free period of time between the herxes. MP is so brand spanking new there are no long term outcomes to be shown yet…but the short term ones so far are sure nice!

I've shared with my friend the info. But, as we all know, this is a really personal decision and a gutwrenching one at that. I certainly weighed every option carefully before proceeding. This is where I presently am on my roadback. Sorry to hijack your thread a bit here, but my personal look at methotrexate is to stay away from it!!!!

BTW I have another friend that's had RA for 5 years and has done nothing to treat it! He's seen too many relatives die early from the rheumy drugs.
:shock::shock: AND his hands are swollen and drifting. Yes, I also shared the RBF info with him.

We all have our unique journey.

Michele

[katieb]

Thank you so much, all of you, how could I fail to be convinced by that lot. It's a definite no-no to the mtx – I need my lungs for when I get running again !!!

Michele – that is such fantastic news about the woodwind ! Long may your improvement continue.

By the way I also have twins – boy/girl now 16 luckily and old enough to do stuff for me instead of vice versa ! How old are yours ?

Joe – about the biologics. Here in the UK you have to be on max dose of mtx PLUS sulfasalazine for at least a year before you can even be considered for them. So I'm afraid I am never even going to have the chance to try them, if I wanted to. Good old NHS (and I don't think it makes any difference if you go to a private doctor either, though don't quote me on that). So glad your wife is doing well – I also know people here who have improved enormously within weeks on them.

Good health to you all :roll-laugh:

Katie

[suera]

Katieb

I believe that you must take the MTX here in the USA too before they will offer biologics. I started with MTX and  prednisone, it took me a year to get my bearings straight and find ap. Then started ap and did much better, stopped the methotrexate, didn't think it was doing anything for me anyway…..wrong, it  was but I had to learn that the hard way:X. After 1 1/2 years on ap and not seeing much more improvement, feeling bad all the time  and missing to much time with my boys I finally, reluctantly, started Enbrel and as Joe said saw improvement after first injection.:) I have  been able  to stop prednisone and my plan is to stop mtx and continue Enbrel with mino. Hopefully with inflammation finally under control after 2 1/2 years, maybe the Mino can get to the “bugs”. I don't think many here buy this theory but in the past I have read so often, on this board, about if the inflammation isn't controlled the mino can't work effectively.

Healing to all!

Sue

[Michele]

Hi Katie,

My twins are identical boys. They are 9 and really have so much fun where-ever they go. They make their own party. :roll-laugh: I am thankful that they are mostly independent and old enough to help out some.

Sue's experience with taking MTX first was mine too. The first rheumatologist would not consider a biologic until I “failed” methotrexate and he was talking a year. As a professional musician, every aspect of that frightened me. I need my lungs and my hands. If I could have tried Enbrel with AP, I would have gone for it to get out of the horrible pain. But, because the IV Clindy brought all my blood markers back down, by the time I saw a second rheumatologist, he could not find evidence of RA in my blood. And I was also running the MP by him to see what he'd say. He said there wasn't a lot of research done on minocycline because there is no money in it for drug companies. He wanted a double blind study which MP certainly is not. I actually liked this second rheumatologist a lot because he was so honest…and kind.

Sue, I'm glad to hear you are finding success with Enbrel! I know that was a really tough decision for you. I have talked with a medical assistant who followed your path…Enbrel and Minocin. She indeed was able to stop the Enbrel and go to mino only.

All the best!
Michele

[suera]

Thanks for that Michele. I sure hope I have  the same success as the medical assistant you spoke of. I am so glad to hear you are doing well also and can play your instruments and enjoy your boys. Life is just a little sweeter when you appreciate every move:).

Sue

[Author]

Posts