Hi, just another newbie

I was diagnosed with RA in Feb. '14. After reading about antibiotic therapy, I talked my Dr. into letting me try it, while also taking Methylpred. He put me on Methotrexate, and after about three weeks I had to stop it due to my hair falling out, the worst headache I've ever had and the inability to concentrate. Then he prescribed Leflunomide, which after only two pills made my stomach hurt and hair fall out. Now I am (still) on Minocycline/Methylpred. I still have flares, stiffness and pain, but no more morning crying, and I understand that this therapy takes time to work. I feel better knowing that the Minocycline isn't toxic and I'm hoping that it will one day work the way I understand it to.

[allanah]

I think you and your Rheumy have to work in a partnership of what's best for you. Have you got some painkillers? Also the Nras website is great for advice as is their helpline x it took a few different drugs for me to try and they often can unfortunately can take 3 or sometimes 6 month to feel the effects. I find people on here very supportive and funny too at times. Keep blogging and let us know how you get on xx

[allanah in reply to allanah]

Ps why "just" a newbie, it's definitely the hardest time I feel xx

[Hidden]

I think that you're right, as I still haven't accepted the fact that I'm disabled.

[nomoreheels]

Hiya & welcome. It sounds as though as you're at the start or treatment you need to give the medication time to work. As Allanah says it often takes different combinations to find the one that works for you but do need to give them chance to work. I haven't had Leflunomide or Minocycline/Methylpred but have taken Methotrexate for 5 years. I had side effects on the tablets, including hair loss, but the relief it's given me, along with my other meds far outweighed them. I now inject & suffer far less & continue doing well compared to how I was before. As I knew nothing of the other meds you take I did a quick search, always willing to learn. Were you aware that Minocycline can also cause hair loss & having read further I'm surprised at your view of it not being toxic? Unfortunately many of the drugs used to treat RD are not very nice but without them we'd be in a sorry state.

Maybe contact your Rheumy team with any concerns if you're really struggling.

[Hidden in reply to nomoreheels]

I suppose that I should have said that I believe Minocycline to be less toxic. I've been on 200ml daily for almost 3 months now with no side effects. For me, I guess that I'd rather feel the pain of arthritis than feel sick from the meds. As with everything, I have good better days than not, but am waiting for a cure.

[nomoreheels in reply to Hidden]

Are you in the US? I ask as I think you're meds are unusual for first line treatment in the UK. Treatment usually starts with methotrexate and at least one other DMARD & short-term glucocorticoids & think you'll find many of us on here won't recognise your meds as used for RD. I wasn't diagnosed in the UK & wasn't hit with these drugs at first & wondered if it was a new regime that's being tried here.

I do think though it sounds as though your pain should be better controlled, it will help you cope better. Were you not offered any painkillers or do prefer not to take them?

Maybe you'd be better focussing on your new condition being controlled rather than waiting for a cure as I fear you'll be disappointed! There are some on here who have suffered a long, long time & I'm sure I speak for all of us when I say a cure would be utopia but fear it's not in the offing just yet hence the meds for control & prevention of further damage used now. A new drug is being trialled in the UK but it's in early stages & only people who have tried biologics & failed to respond are being considered. Frustration is common in early diagnosis & acceptance of a change of lifestyle even more so but I've learned it's not helpful in the long run. I've found the support & advice of the wonderful people on here have often put me on the right track.

Hope you're feeling at least a little better today & if you feel like ranting rant away, it does help.

[Hidden in reply to nomoreheels]

Hi There. Yes I am in the US (Wisconsin), and no, I'm not holding-out for a cure, but it probably sounded that way! Our first-line treatments are about the same as yours. I have been on Methylpred since being diagnosed in Feb. Dr. had me on Methotrexate as well, but I had a bad reaction to it. I'm not sure why he had me try Arava as it's basically the same thing, and I had reactions to that as well. I wonder if my being sensitive to additives, preservatives, dyes, chemicals and perfumes has something to do with my lack of tolerance to these drugs. There have been studies on the use of antibiotics in treating RA and the results are promising. This is a link to one of the sites, if you're interested: roadback.org/index.cfm/fuse... The Minocycline I'm on is so much less toxic than the other drugs, and the reason for it's use makes sense to me. I guess I'd rather start-off this way, although it takes longer to work.

I have always been of the mind that herbals and such deserve more attention. The products are there ready to be tested, but the pharmaceutical companies have less to gain by investigating their properties. There are herbs that have been tested, Celastrus being one, which are very promising, but there again testing is slow as there isn't money to be made. Medical Cannabis is currently being tested. If there is an alternative to the harmful drugs, that's the way I'll go. I'm sure that I sound foolish. Maybe I am. Time will tell...Thanks!

[nomoreheels in reply to Hidden]

I wondered if you were, hence the question. It can be so easy be misunderstood when writing as we can't use intonations. I've mentioned this before as wires can be crossed & regaled how I got myself in trouble at times when speaking Spanish as they rely so much on it!!

Its not helpful being intolerant of so many things & can understand you choosing the antibiotic route with these hindrances. I've read the first page of the link & intend delving further later this evening as it is very interesting though seems it does depend on a lot of what you've already tried & how advanced you are in the disease, but it's gained my interest & that's not bad for me as I "believe" in traditional RD drugs them having worked for me! One of the GP's in my Practice is also a friend & I've sat round many a dinner table arguing her case with her for traditional drug v alternative natural remedies. She just about accepts me using arnica for my bruises she's so resolute about chemical meds! I did try cannabis which my H put into melted chocolate & re-set in blocks for me but I wasn't too happy at having little control as to how much I was taking so knocked that on the head & it did't do an awful lot for me either but maybe that was be not really wanting to go that route!!

I don't think you're being foolish, far from it, but as you say time will tell & do keep us updated with how you're doing now you've found us.

[abeliever in reply to nomoreheels]

watched this just yesterday and wondered about it helping RA as I am now off my MTX but suffering still. You mentioned cannabis, this is on medical cannabis which atm is being given in some parts of the USA for some conditions. It seems it is best to take that which has undergone certain checks with known % content of components. youtube.com/watch?v=i2qFDb8...(Not working as expected?)

[Hidden in reply to abeliever]

Thanks for posting this. I had seen the first one and was glad for the second. I was surprised to see what England is doing. I hope our government stops being so tight about it and follows England's example. I had to stop taking MTX as well. Am on Minocycline/Methylpred. I still have some pain, especially in the mornings, but I have no side effects. I hope you'll be able to manage soon.

[nomoreheels in reply to abeliever]

Morning abeliever. I'm so sorry you're suffering. Have you been given other options?

Re cannabis, this was my feeling but at the time as I'd on the whole, though not always (!) silently condemned those who smoked it around me for recreational purposes (in Spain where personal use is legal) but I was in a bad place with my RD early days & fed up of having my H nagging me to try it, thinking it would ease my pain. I gave in when he suggested of adding it to choc. (he knows my weak points!) & didn't really want to go this route anyway so probably didn't give it much of a chance & as I said didn't really have much control over how much I was ingesting.

Anyway, thanks for the link & I'll take a look later as off out this morning on this lovely sunny day.

[abeliever in reply to nomoreheels]

No options atm as my platelet levels are low at 103 so being monitored for now and just on Naproxen , Adcal and Omeprazole. I would not advocate street drugs, of course, it is just on that video it seems they have made an oil taking out elements that are bad. Enjoy the day, sunny here too Nr Bournemouth.

[Hidden in reply to abeliever]

I wouldn't be inclined to take street drugs either, but it will become legal in WI, and I will be on-board with it (if I can afford it)! Where is Nr Bournemouth?

[abeliever in reply to Hidden]

Uk me too if it works.I don't trust big Pharma.

[nomoreheels in reply to Hidden]

Not cheap by any means is it? If & when you try it I hope it helps you.

By the way, Nr means near & Bournemouth is a coastal town in the county of Dorset on the south coast of England.

[nomoreheels in reply to abeliever]

Hiya abeliever. Just watched it. Well, it's altered my view somewhat seeing little Vivian struggle so much & the difference it made for her. If it only helps her & other little ones like her it would be a blessing. There was no mention as to timescale to reach possible trials in the UK which I found frustrating. I've taken notes & going to do some searching. I will post if I find any more positive info. on the company involved or anything else of positive note.

[sylvi]

Welcome from me. I don't know about the drugs that you are on so i can't comment on them. What i can say you are not alone. There is always someone on here to talk to you anytime of the day. We are a multi-national people who all have RA or diseases. Welcome again.xxxxx

[Hidden]

Thank you Sylvi. I appreciate the welcome.

I have suspected that we aren't just americans on here! Thank God!

[Susiej38]

I am also here in the U.S. I know 5 people personally in different areas and the usual protocol in treating RD or RA is a DMARD and an anti inflammatory, ex. Mobic, Pred., etc. followed by adding biologics if needed. I will be very interested to know how you do on Minocycline. I have not heard of that before- good luck!

[Hidden in reply to Susiej38]

bing.com/search?q=the+road+...

[Hidden]

Where in the US?

The trick will be in getting my new doctor to let me go the distance on Minocycline/Methylpred. I just changed doctors after 3 months, as the last one threatened to put in his notes that I'm refusing treatment if I don't take something other than Minocycline (It must have slipped his mind that I had tried Methotrexate and Arava). He'd been pushing Humira on me, but I am honestly afraid to take it. I have read so many blogs and reports regarding it and how can affect (or doesn't help) a person...If it were a cure, I'd go for it, but it seems to be just another stab in the dark.

[Susiej38 in reply to Hidden]

I live in Texas. I know RA patient in Utah. She knows another RA patient. Most Rheumatologists of people I know are on MTX. That seems to be the gold standard. I originally tried MTX ( injections) and did not think it was helping and then went to leflunomide. I immediately had problems. Mainly digestive. I went back on MTX(injections) and decided to give it 4 months before I ruled it out. After 3 months it began working. My dr. has added Enbrel. I'vehad 2 injections, but had to stop because I had beginnings of pneumonia. Am getting ready to try adding it again.

[Susiej38 in reply to Hidden]

I need to add this,too. Yes, I am scared of the biologics. I was very upset the 2 weeks I used it. I seem to have problems with congestion in my chest, but I have decided to try it for 3 months when I get clearance in next week or two. Don't know if Enbrel contributed to early stage pneumonia or if I had just overdone it and put myself at risk.

[Hidden in reply to Susiej38]

Why can't you just stay on the MTX? Both drugs lower the immune system, and maybe the combo is too much for you. I'm sensitive to, or just don't like so many things, like dyes, additives, artificial anything, and have some allergies. The thing with me is, if something was a cure, I would endure the side-effects, but most every option given only buys time and poisons the body even more than the RA itself does. That's just my thought on it.

[Susiej38 in reply to Hidden]

I have considered what you just said. It is a difficult decision. I had pneumonia in Dec. and then I was just on MTX. I was taken off MTX and became severely crippled and in pain. At that time I would have been willing to do or take anything. I basically could only lie in bed and drag myself to bathroom. My blood work was terrible- extremely high inflammatory markers. It was at that time that Rheumatoligist advised me to consider Biologics. It may be I am just prone to lung problems. I want to get cleared for lung issues and restart Enbrel if possible. I have stuck with MTX and it has proven to really help me. I am also presently trying to taper off Pred.

[Hidden in reply to Susiej38]

You sound like a smart cookie, and I wish you the best.

[Jora in reply to Susiej38]

How are you finding the weaning off Pred? I'm coming down from 20 and am feeling dreadful, emotionally. The physical pain is still under control, but I can't stop crying, feel extremely anxious, short-tempered and anxious. Jo

[Susiej38 in reply to Jora]

I think we talked before. The highest dose I ever took was 20mg and I was "manic" is the term my internist used. I have been mostly on 15 mg, then went down to 10, 7.5, 5 and stayed a few months on 5. My internist was the dr that told me it gets even trickier the lower you go. I was told not to decrease more than one half mg. every 10 days.today I went from ten days at 3mg to 2.5 mg and am anxious. I have taken it really slow. Maybe some of the emotions I am feeling are due to coming off Pred cause I have felt depressed.this probably sounds silly, but I am much more fearful of RD pain than any drug side effect. And I am just as afraid of steriods if not more so than MTX and biologics.

[Hidden in reply to Susiej38]

Feeling better? I hope so.