MTX & chest

[LorUK]

Hi All,

I haven't posted for a long time, but I've tried to keep an eye on all the posts.

I'd better do a very quick recap……..

RA started June 99
Tried to control it with diet & natural methods, no luck so started Tetra around June 00
Switched to Minocin approx 18-24 months later, tetra wasn't really working.
Had lots of ups and downs with the Mino, but on the whole got progressively worse over the next 6yrs.
Jan 08, my right knee gave out almost completely, couldn't walk, had to take about 2 months off work. The RA flared up all over my body. I was so desperate, I finally gave in to what the rheumys wanted me to do all along & started on Methotrexate.
After a steroid shot and starting the MTX, I steadily improved, took a few months tho.
I stopped the Mino around Jan/Feb 08 and haven't taken any since.

So, that brings me up to now…….. I've had a few lovely side effects from the MTX, alot of hair loss, continued bone deterioration…… but recently I've felt on & off something not right in my chest/lungs.
I don't have a cough, and it's not painful, although I do feel discomfort. Yesterday I was in a dept store, I sat in the furniture dept & noticed my breathing was shallow & fast………. I dunno, it's hard to describe.
I've also had a pain in my left shoulder blade area around my back, for a few weeks now.

Those who remember me posting from before know how much I hated having to take the MTX…….. but last Jan was awful, I really had no option. Oh, and currently I'm on 15mg weekly. They tried the injections on me, but when it came to me doing them myself, I completely chickened out & went back to oral tablets.
Infact, thinking about it, it was around this time I felt the difference….

Anyway, I'm not sure what to do next. I'm scared I may relapse to where I was last year. I want to give the Mino another shot, but I know it's not as effective 2nd time around……….

I think that's enough info for now…….. I don't want to overdo it in 1 post ……..

Any help & guidance would be fantastic.

Keep well all……

Love
LorraineUK

[lynnie_sydney]

Hi Lorraine and welcome back! Sorry you've been through such a rough time. It's not always the case that mino is not as effective 2nd time around. Have you thought about consulting Dr H in Surry (assuming you didnt the first time around)? It sounds like you need some real AP expertise with the view to a restart on AP treatment. Rosey UK has now consulted with Dr H (and is receiving IV's), katieb has had a very positive experience with her AP treatment under Dr H and doesnt post here so often now because she feels so well.

Also spacehoppa posted a few days ago that she is going to get tested at the Breakspear clinic in Hertfordshire following a link originally posted by katieb. You might want to take a look at spacehoppa's post and have a look at the link to the clinic.   http://www.rbfbb.org/view_topic.php?id=2580&forum_id=1&highlight=breakspear . spacehoppa (Ruth) also has an appointment there next week, so may be worth you following up with her on her experience. I know it's so difficult in the UK with only one experienced AP doctor listed. But it does sound as if you need some really good support and advice on how to proceed from here. Best to you Lorraine, hope you find some answers – and relief -soon. 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)

[Susan LymeRA]

Hi LorUK

I'm not in the UK so can't recommend specific doctors but here is what I am thinking about your situation.

The mino probably was not effective initially because it was the wrong med for whatever infections you are carrying.  When you switched to MTX it behaved predictably if you believe in infectious causes to RA.  It initially made you feel better but it was also paving the way for the bacteria/virus/parasites to grow and cause more damage/harm.  Not to mention the side effects of MTX itself.

Your lung issues sound like babesia to me.  Basesia is a tickborne illness that can cause RA (per my infectious believing rheumatologist) and definitely effects breathing.  It also causes heart palpitations and fatigue and muscle weakness.

Mycoplasma pneumoniae causes upper respiratory issues.

These are just a couple of possibilities.  You need a medical detective to identify your particular pathogens and treat them as needed. 

The mino alone wasn't enough for me either although I never stopped taking it.  It was helping.  I just needed more.  I'm currently on Mepron and Zithromax for the babesia and I am finishing up a 10 dose course of homeopathy for mycoplasma.  I will report the final outcome of that treatment once subsequent bloodwork is run.

My doctor eventually convinced me to take Enbrel so she could aggressively go after the babesia.  Initially I kept catching infections.  I finally cut the Enbrel in half and have been doing great ever since.  That was in February.  She does not anticipate the Enbrel will be needed more than a year.  As soon as she knocks out babesia, we will stop the Enbrel, but in the meantime it is protecting my joints.

Rheumatologists like to say “we don't know what causes RA” and they don't even try to figure it out.  That doesn't mean there is not a cause. 

Susan

 

[Steven]

Lorraine,
 
There is a potential risk of drug-induced pneumonitis from taking Methotrexate. Not to scare you, but this is serious.  Tell your Rheumatologist what's going on, if you haven't already.
 
Good luck,
 
Steven

[LorUK]

Thanks for your replies……. Steven, I know you don't mean to scare, MTX does that to me in any case!!!! Any info is good info, so thank you

Lynnie, I saw Dr H for almost 8 yrs from June 2000……. we were never really able to break the back of the RA. When I went into his surgery for the last time in Jan 08, I was so bad I had started using a stick, I burst into tears, & I think at that point we both knew something else needed to be done :(….. I haven't been back since.

Susan, I'm not sure I have Basesia……… I've never had a tick bite, to my knowledge. Is it something that a blood test would determine? I've tried so many alternative routes…… homeopathy, kinesiology, accupunture…..but still the RA marches on……..

My current rheumy is 'nice'….. but she doesn't buy into the abx route……. compared to the others I've seen though, I'm happy enough to stick with her.

I think it should be a pre requisite for all rheumys to have experienced the pain of RA in order for them to be able to treat us patients!!! I know it sounds harsh, but if they did, boy, I reckon things would be sooooo different.

Anyway, I'm going off on a tangent……. I still haven't taken my MTX, it's 3 days overdue. I don't know if it's coincidental, but my chest & lungs haven't hurt so much. I can still feel slight discomfort in my shoulder blade when I rotate my shoulders though.

Thanks again for the replies

Lorraine

[Maz]

[user=537]LorUK[/user] wrote:

Lynnie, I saw Dr H for almost 8 yrs from June 2000……. we were never really able to break the back of the RA. When I went into his surgery for the last time in Jan 08, I was so bad I had started using a stick, I burst into tears, & I think at that point we both knew something else needed to be done :(….. I haven't been back since.

Lorraine, so sorry you're having such a rough time. 🙁 Was just wondering, what other antibiotics other than minocycline did you trial while on AP? Did Dr H ever include a bacteriocidal and test for strep titers? Were you ever put on any type of combination oral abx therapy? Tested for myco types or other infections, like chlamydia pneumoniae? Could minocycline-induced lupus have been at the root of your failure specifically on mino? Was that ever tested?

Also, have you investigated the possibility of leaky gut, candida, food sensitivities, inability to detox, etc? This may all be moot if you've already had these corners well-covered, of course, but just wondering, as you seem to have tried so many other adjunctive therapy avenues. Here is a link to an article on the main site that may help to stir some further thought on all this. I'm sure you're already an old pro, but just thought I'd throw some things out there for you, in case.

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/89.html

I echo Steven's suggestion to get in touch with your rheumy and mention the chest pain. 😉

Do hope to hear what your rheumy thinks and hope you manage to sort this out soon!

Peace, Maz 

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