Clomid puts me in remission! And AP seems finally to be working…

[spacehoppa]

Sorry to have such a confused title, but the truth is that my picture is confused.

I've had RA since I was 15 y o and I turn 35 tomorrow – ouch! :doh: 

I've always had hard to control RA and even when the drugs are working well, my ESR and CRP never drop below about 25.

I managed to talk my rheumatologist into prescribing me minocin, alongside the prednisolone, humira and arcoxia about 8 months ago. I know this combination isn't ideal, but I was too ill to come off anything before starting. My CRP was up in the 70s and 80s at the time.

Well, as with everyone else, my improvement has been slow and steady. I've noticed over the months that I've been able to reduce my steroids from 7.5mg to 6 mg and change them around so that I take them all in the morning – something that I couldn't manage before.

I've also had to stop taking the arcoxia because I have a bad stomach ulcer (or two) that just won't tolerate the NSAIDS anymore. I was terrified when I stopped them as they have been my mainstay all these years, so I was pleasantly surprised to find that moving onto a morphine patch was okay, no problem really. And just this last week, I've been able to remove the morphine patch as well and have been really very pain free.

The only problem I have now is that I feel a little fatigued between 10am and 12 midday when yesterday's steroids have worn off and today's haven't kicked in yet. (All suggestions welcome.) I know weaning off the steroids is the answer and I'll try that in a week or so. I'm just enjoying being well for a bit.

So, onto the clomid. Three weeks ago I took clomid (clomiphene citrate) for the first time for infertility (I'm trying to get pregnant with number 2) and within a few hours I was in remission. Better even than being pregnant! Does anyone know why this might be? I know I have low estrogen as I only ovulate every 8-9 weeks, and I probably have low hormones generally. I have low progesterone too. Could the steroid hormone stimulating effects of the clomid be what's causing me to improve? You only take clomid for 5 days per cycle, so I stopped the clomid over two weeks ago but the improvement seems to have continued, with a blip of a few bad days after I stopped it. (Might this have been a minocin herx though?)

The last part of the picture is that I've finally got hold of brand name minocin. I live in the UK and we couldn't get it here for a while. It's available again now, and this time I got my prescription filled I insisted on Wyeth brand minocin MR. I've been taking this for about 4 weeks now and much of my really steady and noticeable improvement has occurred during this time. In fact, I think I notice feeling better the day after taking it?!

One last thing to mention, I took MMS (a sort of homebrew antibtiotic – google Jim Humble MMS to find out what I mean) for a couple of months over Christmas time. I never got to the full strength dose, but it was around this time that I was able to cut back my steroids. I did feel improvement, but I didn't get well either. Although I have been improving steadily since then, month on month and my blood tests results bear this out. My ESR rapidly went down into the low 20s, whereas it was in the 80s before I started the MMS.

So, what's doing the work? Oh, one last thought, 3 weeks ago I also started exercising every day on the Wii Fit balance board. I can't say enough good things about this. My balance has improved so much and my overall fitness too. I am finally getting my stamina back and am able to take my son out to three different places in one day – unthinkable until the last few weeks.

I'm sorry for such a HUGE post. If you're still with me, I'm very grateful. 😀

I'm sure all of these things have contributed somewhat, so I'm sure it's a combined effort, but if anyone has any wisdom to share about the effects of clomid on arthritis I'm all ears.

I wanted to post an update as much as anything else to say how grateful I am to the RBF and the people on this board. Since finding this place and the AP I've had more hope and happy days than I dreamed possible.

BTW, Way to go Maz!! Glad to hear you're reaching remission at last! You're a star around here.

Ruth

[Cheryl F]

Ruth,

I made it through your very informative post. Thanks for sharing. I am sure your experiences will be helpful to others.

Cheryl F

[linda]

Hi Ruth,

Glad to hear you're doing so well! I've often wondered what would happen if I took fertility drugs since I went into complete remission during 3 of my pregnancies (the fourth miscarried). I've always been too embarrassed to ask any of my doctors about it, tho. There does appear to be some connection to hormones with some of our diseases. I was told several years ago that the immune system shuts down a little bit when a woman is pregnant to prevent rejection of the baby, but that information may be outdated. It leaves the guys out of the equation, tho, unless there is some similar connection to their hormones-I do remember taking progesterone for endometriosis but I can't recall it affecting my PsA. I got a mustache for a while tho!:blush:
What are the side effects of Clomid, and how long can you take it? Thanks for posting, this is interesting information.

linda

[whaleharbor]

Spacehoppa,

I believe there is a definite connection to infertility and RA.  My RA started when I went of b/c pills long ago…it gets worse before a period….I have no idea about the mechanics involved…but I think there is a definite connection.  I know many women with pcos who have other “autoimmune” diseases.  Here's wishing that someone will research this in the future.

— whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[lynnie_sydney]

Hi Ruth – it's not going to be easy to say what's doing the work, because you've changed alot of things at the same time. It may be one, a couple or all of them in combination. Hormones most definitely have a part to play in triggering AI diseases – women often develop them after traumatic hormonal upheaval (pregnancy, menopause). Not sure whether you can stay on the clomid indefinitely (dont know the drug). Sounds like whatever you're doing is working great and it must be soooo wonderful to have this happen after so many years of suffering with this. And, living in the UK – where I know it is really difficult to find someone to even talk about AP – shows great guts and determination. Fantastic news and long may your return to wellbeing continue. Lynnie

PS Could you PM me with the details of the doc who is giving you your mino scrip? I know a few people in the UK who may benefit. (Plus could be useful on the RB docs lists in some capacity) Many thanks   

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)

[spacehoppa]

Thanks for all the replies everyone. I do believe in the AP and am so encouraged to see my health returning. And I can't help but think that maybe what the clomid is doing by upregulating my hormones is just suppressing my immune system like all the other regular DMARDS, which may be undesirable as it works against the minocin.

On the other hand, I do wonder whether having a hormonal deficiency means that my body reacts to the mycoplasma more than other people's because they have a natural hormonal suppression that allows their immune system to leave the bugs alone to multiply uninterrupted. Maybe having mycoplasma doesn't make you sick if everything else is working as it should? I really don't know.

Anyway, I sure wish all rheumatologists would ask women about their menstrual cycles, birth control history, age of onset of menopause etc when they first take us on as patients. With this data, we might find out some useful things.

I took part in a study 3 years ago that was studying the link between arthritis remission and pregnancy. I gave the study my blood before, during and after being pregnant. I'm going to email them with my findings about the clomid. I doubt they'll be interested, but it's worth an email.

[Maz]

[user=415]spacehoppa[/user] wrote:

I do believe in the AP and am so encouraged to see my health returning. And I can't help but think that maybe what the clomid is doing by upregulating my hormones is just suppressing my immune system like all the other regular DMARDS, which may be undesirable as it works against the minocin.

On the other hand, I do wonder whether having a hormonal deficiency means that my body reacts to the mycoplasma more than other people's because they have a natural hormonal suppression that allows their immune system to leave the bugs alone to multiply uninterrupted. Maybe having mycoplasma doesn't make you sick if everything else is working as it should? I really don't know.

 

Hi Spacehoppa,

You raise some very interesting ideas and ones I've also been contemplating in relation to the greater incidence of women to men in many rheumatoid diseases. Steroidal hormones are just that…steroids, which in effect have some type of immuno-modulatory effects on the immune system….one being estrogen-induced immune suppression. So, perhaps your questions aren't exactly mutually exclusive, but go hand-in-hand?

Here are some studies that you might find interesting.

Sex hormones, immune responses, and autoimmune diseases. Mechanisms of sex hormone action
S Ansar Ahmed, WJ Penhale and N Talal –American Journal of Pathology, Vol 121, 531-551, Copyright

[Maz]

And another wiki reference on mycoplasma:

http://en.wikipedia.org/wiki/Mycoplasma

“Mycoplasmas are unusual among bacteria in that most require sterols for the stability of their cytoplasmic membrane. Sterols are acquired from the environment, usually as cholesterol from the animal host.”

Peace, Maz

[spacehoppa]

Wow, all that's hugely interesting Maz, thank you! You know, I was thinking along these lines myself a little, because I made the connection between the fact that steroid hormones are made from cholesterol and everyone in my family with rheumatoid arthritis has suspiciously low cholesterol levels, despite having had triple heart bypasses, strokes and so on.

If the mycoplasma are indeed stealing our cholesterol, no wonder we have less hormones. Even men have estrogen, albeit at lower levels. My uncle also has RA, a triple heart bypass, and his cholesterol level is 1.7.

I'll read your links carefully Maz. Thanks again.

ruth

[spacehoppa]

Oh, and I went into pregnancy induced remission the day after my son James's embryo implanted, and I came out of it again the day after giving birth! So, I'm obviously very sensitive to hormonal changes!

[spacehoppa]

Oh, one last thing. I passed from the follicular (estrogen) phase of my cycle into the luteal (progesterone) phase a couple of days ago and today I've woken up in tremendous pain, mainly in my knees. Can I really be this sensitive to hormonal changes, or is it a herx???

[lynnie_sydney]

Wow – who could possibly say for sure? It could be either or both. I am so sorry you are on such a see saw of symptoms and pain. It would be so good if you could find someone to help put some of that perplexing jigsaw together for you. 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)

[Maz]

[user=415]spacehoppa[/user] wrote:

You know, I was thinking along these lines myself a little, because I made the connection between the fact that steroid hormones are made from cholesterol and everyone in my family with rheumatoid arthritis has suspiciously low cholesterol levels, despite having had triple heart bypasses, strokes and so on.

If the mycoplasma are indeed stealing our cholesterol, no wonder we have less hormones. Even men have estrogen, albeit at lower levels. My uncle also has RA, a triple heart bypass, and his cholesterol level is 1.7.

Ruth, here's another. It's another old study (Jan 1971), but I haven't been able to find any newer ones. I guess there just hasn't been the interest in this field of study.

Sterol requirements of T-strain Mycoplasma

 

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=248358

 

Interesting that you've made that link to lower cholesterol levels, because that's exactly what happened to me and what made me question all this in the first place!

 

For a couple years, I'd been doing all kinds of things to bring my Total and LDL cholesterol levels down from borderline high. I succeeded with exercise, diet and natural supplements. For a year, I'd been seeing a holistic doctor and was put on bio-identical hormones (BHRT) for peri-menopausal symptoms, but the doc wasn't checking my hormone levels regularly enough. The BHRT knocked out my thyroid levels and I had to stop them (doc told me to stop cold turkey). I then got infected with Lyme several months later and my Mum passed away very suddenly all within a short period of time. So, hormone imbalance, combined with infection and shock was the perfect mix for explosive onset RA. It's all too clear now, seeing it all in retrospect, because the sequence of events were so close together.

 

The interesting connection with my cholesterol levels is that they had been high prior to all this….when re-tested by my Lyme doc about 4 months after getting Lyme and then RA right on its heels, my cholesterol levels had plummetted to borderline low….literally, Total cholesterol was 141, right on the line….that with no exercise or supplementation. 

 

This was quite stunning to me, as I'd been working so hard to bring down my cholesterol naturally for a year or so and then for it to suddenly plummet made no sense. This was what gave me the heads up that these cell-wall deficient organisms must need cholesterol in order to thrive and they'll take it from the host in whatever bio-available form they can get it. So, it follows that they're happy when they have enough of it…but when they don't, they die off and we experience these hormonal herxes/flares.

 

Again, though….I'm no scientist or doctor…these are just connections that seemed very obvious in my own case. I'm just 'a little' troubled that our doctors and scientists aren't also picking up on these connections with rheumatoid disease. 🙁  I'm sure there is much more to this overall picture than meets the eye.

 

Thank you for sharing about your family cholesterol connections, Ruth. Amy Proal has made some interesting connections, too, as it relates to heart disease and mycoplasma on her website…http://bacteriality.com/

 

Peace, Maz

 

[linda]

Really great information from all of you on this topic. I mentioned that I went into remission during each of my full term pregnancies; I also had flares after each child was born-almost 6 wks to the day after each birth. The first was just a few fingers, the second involved many more joints but was controlled by motrin and was followed by a spontaneous remission about 8 months later following a move to AZ, the third involved over 20 joints and severe inflammation and debilitation. Two yrs later I again went into a complete spontaneous remission, no meds, no swelling, no pain, no fatigue, again following a move back to AZ. (these were short military assignments for my husband) That lasted 5 yrs, then the symptoms gradually began to return and have continued through to today. The reason I moved back to AZ 2 yrs ago after my youngest graduated was the spontaneous remissions that had occurred previously here. This time it had no effect at all, in fact, I've never been this ill. It's disappointing because I really wanted to be well and get off of all these meds.:doh:

I'm convinced of the hormonal connection in the first 3 flares, but I'm still stimied by the last one that has continued for over 12 yrs. I had not yet had a hysterectomy and was too young for menopause. The hysterectomy was about 9 yrs ago and I've been on HRT since, but the symptoms haven't changed for better or worse since then. As for cholesterol, mine runs a little high in me and my mother's side of the family.

The hysterectomy was for endometriosis, and some of the research I've done connects that disease to autoimmune diseases-a fairly high percentage of women with endometriosis also have some form of arthritis, SLE, ect. For me, the PsA and endometriosis developed at the same time. Just more evidence for the hormone connection?

Sometimes I feel like someone lost in the woods- they think they have found a path, then it turns out to lead no where or end abruptly. There has to be some kind of connection with the hormones, dry warm climate, stress, etc. I wish we could put all these pieces together once and for all!

linda

[Maz]

[user=11]linda[/user] wrote:

The hysterectomy was for endometriosis, and some of the research I've done connects that disease to autoimmune diseases-a fairly high percentage of women with endometriosis also have some form of arthritis, SLE, ect. For me, the PsA and endometriosis developed at the same time. Just more evidence for the hormone connection?

Hi Linda,

Have you ever come across any information connecting endometriosis with mycoplasmal infection? Just wondering, because your mention of this triggered a vague memory that Amy Proal said something on this topic on her website…my memory can be really bad sometimes, though, as I read so much stuff I get my qires crossed sometimes! So would have to recheck that info. 😉 In the meantime, if you come across any info, would be great to add to the stockpile.

Peace, Maz

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