SOME REASSURANCE NEEDED

[michaelslove]

Not quite sure how to deal with this so any input would be appreciated.   Michael stop Methotraxate +- 8 weeks ago.  He came off anti-inflammatories end of feb.  Since then he has been getting stiffer and stiffer.  He only started the AP such a short time ago, so we aren't expecting results just yet.  Also he is on DOXYCYCLINE at 100mg a day only.   He sees his doctors on 14th so he is going to discuss dosage then.   He has just started back on MSM this week so we don't expect to see results from that too soon either.   He is so bad that he actually cannot turn over in bed without a struggle.   He says that the joints hurt if he put any kind of pressure on them.  

When Michael was seeing the Rhuemy, we really left things in his hands more than we should have, I suppose.  Now that he has decided on this journey, the decisions are his – but meds still scare us i.e. trusting yourself to do the right thing.  He has no intention of giving up and no illusions that it is going to be easy.

He is considering going back on the anti-inflammatories for a while, I don't really want him to but hey, I understand when I see how he is suffering.

 

[Maz]

Hi Michael'sLove,

So sorry to hear Michael is going through such a rough time.

Was there a reason Michael or his doc chose doxycycline over minocycline? For people with scleroderma, the tetracycline of choice tends to be minocycline and often the Harvard Protocol is used (unless a patient is hypersensitive to high doses or herxing too much and it needs to be lowered). The Harvard Protocol is 100mg minocycline twice a day and affords greater immune-modulation and anti-inflammatory benefits.

The reason minocycline is used most often for scleroderma is because of its greater tissue penetrability and it also seems to remain within the blood longer…a longer half-life. Minocycline also has very good anti-collagenase properties properties that are of benefit to people with scleroderma.

Another consideration is that when people begin AP, if they have been on other DMARDs, a biologic and/or immune-suppressants like prednisone, it's not always best to go off these drugs immediately, but to start AP and, once stabilised, to gradually wean off the other drugs, one-by-one. This is because it's not a good idea going into AP while suffering withdrawl rebound from the other drugs, as then there is the rebound and herxing (which is the initial worsening experienced when beginning AP) with which to deal on top of things. 

Dr Brown would often see patients when they were failing or very unwell on the other drugs and there was no choice but to wean them off, but he did use prednisone in the early days of herxing in short bursts (so as not to create dependency, but to reduce pain and inflammation to enable better penetrance of the antibiotic to inflammed tissues).

You say Michael is considering going back on anti-inflams for a while and this may not be a bad idea, as he is so bad right now. This could be discussed with his prescribing doc and also the possibility of minocycline as a substitute for doxycycline, if it's available in South Africa.

Do hope Michael continues on and that he won't be suffering too much during this initial period. The first few months were the hardest for me with severe RA, but after the initial herxing it's been a three-step fwd, two step back dance all the way. Apart from some occasional hiccups, I'm having 95% days now, after 2.5 years on antibiotics. 

Best wishes to you and Michael!

Peace, Maz 

[Kim]

Michaelslove,

So sorry you're both miserable right now. 

Just to add to Maz's post — don't know what the availability of saunas are in Cape Town, but if possible may be worth a try.  My symptoms improved tremendously when I started using an infrared sauna (not steam) a few months ago.  My circulation is so improved now that my Raynaud's is almost gone, plus it clears out all the toxic die-off you get from the antibiotics and your joints will feel great.  So you see, it's not just temporary pain relief, it's actually doing something.

Hang in there, you CAN turn this around…….kim

[stwig]

Maz and Kim have given great advise, as always.  All I can add is my prayers for Michael and for you.  He has just started on a long journey, and unfortunately the beginning is the worst.  I can remember those days 13 months ago where the simple things caused horrible pain.  Just know that in time it will get better.
Starla

[Noel]

Michaelslove,

Although I?ve had PR for 5 years, I caught my disease in the very early stages and treated it with doxycycline.

This is a snippet from my blog after just 3 weeks of treatment.

A little over 3 weeks ago my health was going downhill fast, so much so that I could barely get out of bed. It had got to the stage where I had begun to put my affairs in order. What I needed was a miracle, well I found one, it?s called Doxycycline.

After just 3 weeks on this treatment, I can tell you that I am almost 100% pain and symptom free. I say almost because there are a couple of places where I have, how can I put it, not pain but lets say a hint of a reminder that it?s not completely gone.
My hands and fingers were the worst affected. The change in my hands has been incredible, yesterday I shrieked with sheer joy, because I could wring out the dishcloth without pain. Only you who have this disease will understand fully the euphoria and elation I felt at such a simple thing. A couple of weeks or so ago, I couldn?t even turn the page of a magazine without being in agony.

My hands are still pain free although still very slightly swollen. They have a strange kind of itch. It?s the same itch that you get when a scab is almost healed.

I?m now on week 9 and it just gets better and better.

The attacks are getting less often and the duration and pain is getting less too.

I know it?s not going to be this easy for everyone, because there are many factors involved, length of disease, severity, previous meds, etc etc, but if anyone needed a testimonial regarding does antibiotic treatment work, well I?m living proof. Will there be setbacks? I don?t doubt it, but I do know I would not be in this position without the treatment. I only wish I had started the antibiotic?s five years ago when I had my first attack.

Hang in there, when the antibots cause mycoplasma cells to die off they release more toxins in one go than when alive, so it stands to reason that he will feel worse before feeling better.

All the best

Noel

[richie]

Hi

I think you got some valuable input here —-Seems that the majority of folks who do very well in treating systemic scleroderma are on 200 mg daily of minocin –I think in South Africa its called minomycin

---

Thats the dose I take and I am completely better –also –why stop the anti-inflammatory –unless its for stomach reasons or something like that why stop it ????? —I was told to use Aleve over the counter –it wasnt a huge help but it did help a bit —

richie

[davew]

Lot's of great answers and I have to concur with Richie. Why stop the anti-inflammatories? In order for the AP to work inflammation needs to be kept down plus the pain will be more bearable.

Best wishes to the both of you and here's hoping things improve soon….

Dave

[whaleharbor]

You and Michael are in my prayers. 

– – whaleharbor

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

[JeffN]

I found in my case that I continued to stiffen up after going on mino, particularly my hips, knees, and legs. The stiffness began to abate about three or four months in. I don't know what the cause of the stiffness was; die off accumulating in the joints, the SD, or something relating to being very anemic at the time. I am sure that the anemia did not help matters. But it did get better. I had to go off of anti-inflamatories due to stomach issues but like others have said I don't see where if Michael is tolerating the anti-inflamatories there is any rush to discontinue their use.

Just my opinion.

[David C]

Thanks Maz, Kim and the rest here who have given your support & reassurance not only to Michaelslove, but to me as well who have been experiencing the same struggling for the past 2 weeks on AP. My body has so much going on, pain, fatigue, elevated pain on my wrists (started to have grinding sound on my jaw & wrists) that I almost gave up & go the conventional drugs like methotrexate to supress the pain. Sometimes I dont even know whether the disease is progressing or herxing. But no doubt the pain has elevated so much. The first good sign I experienced is the pain on my chest (when I breath) has disappeared after first few days on AP.

Michael, you are not alone, your post has indirectly help solved my puzzle & doubt. I will definitely try the detox which Kim has advised and the anti-inflammatory drugs(which I have been on anyway-too painful without them) to help manage the pain. NO METHOTREXATE YET

THANKS AGAIN members

All the best to both of us.

[Maz]

Hi All,

An AP old-timer just sent me this link, which seemed pertinent to this thread in light of the different names by which minocycline goes in various countries around the world.

Richie, you're right…in South Africa, minocycline goes by the name “Minomycin” and also “Minotab,” “Cyclimycin,” and “Romin.”

Richie, you might find it amusing that it goes by the name, “Skinocyclin,” in Germany!!! :roll-laugh:

http://www.mosbysdrugconsult.com/DrugConsult/Top_200/Drugs/e1818.html

BRAND NAMES: Arestin; Dynacin; Minocin; Vectrin

FOREIGN BRAND AVAILABILITY:
Akamin (Australia);
Borymycin (Philippines, Singapore, Taiwan);
Cyclimycin (South Africa);
Cynomycin (India);
Klinomycin (Germany);
Lederderm (Germany);
Mestacine (France);
Micromycin (Mexico);
Minaxen (Hong Kong);
Mino-50 (Belgium);
Minocin G (Taiwan);
Minocin MR (Hong Kong);
Minoclin (Israel);
Minoclir 50 (Germany);
Minocyclin 50 Stada (Germany);
Minogalen (Germany);
Minoline (Taiwan);
Minomycin (Japan, South Africa);
Minotab 50 (New Zealand, South Africa);
Mino-Wolff (Germany);
Mynocine (France);
Romin (South Africa);
Skinocyclin (Germany);
Spicline (France)

Peace, Maz

[Randy]

[user=1225]michaelslove[/user] wrote:

Michael stopped Methotraxate +- 8 weeks ago. 

I had 3 Rheumy's, one an expert on SD, tell me that Methotrexate could not help SD – so I stoped taking it very quickly.

He came off anti-inflammatories end of feb.  Since then he has been getting stiffer and stiffer.  …. He is considering going back on the anti-inflammatories for a while, I don't really want him to but hey, I understand when I see how he is suffering.

I have continued taking my NSAID (Diclofenac Sodium 75 mg twice daily) since I have had SD. Without it I'd be in bad shape due to osteoarthritis in my L hip. But it has not hurt my AP healing and Dr. F. is aware of it. I do take Prilosec every day, as do many SD folks, but that is to help with any NSAID stomach issues, as well.

He only started the AP such a short time ago, so we aren't expecting results just yet.  Also he is on DOXYCYCLINE at 100mg a day only.  

AP takes a long time, but it works. Patience is needed.  Prior to going on Minocin, I was on Doxy also, but at 200mg per day.

He is so bad that he actually cannot turn over in bed without a struggle. 

Yes, I well remember the days when I too could hardly turn over in bed, and it was a struggle.  I was afraid to tell my wife about it and that I was that bad off. Now, those days are long gone.

  He says that the joints hurt if he put any kind of pressure on them. 

This is no exageration – all my bones, even my forehead, hurt when I put any pressure on them.  Needless to say, I could not rest my elbows on the table or get on my hands and knees.  Again, those days are now gone.  However, I still have some problems sitting on hard chairs and I can not walk barefooted on hard surfaces.  

Hang in there Michael

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[Kim]

Randy mentioned osteoarthritis of the hip, and for whatever it's worth, when I first got sick I had a frozen shoulder and a hip that would lock up at night making sleep almost impossible.  The orthopedic surgeon was making grumblings of surgery and I knew I was too sick to add more trauma to my body and decided at that time to only address the infection and not the other symptoms. It was the right choice because I haven't heard a peep out of either of those joints now in a very long time. 😉

It's hard to ride this stuff out when you're in so much pain, but sometimes it's the best answer.

Hang in there Michael and David, this stuff works, but does take a little time, unfortunately.

Take care……..kim

[Rockin Annie]

Hi Michaelsove,

I have been on AP since Last Sept, I was advised to go off Mtx cold turkey it took about 7 weeks before it was all out of my system and then the aches and pain started to come back again.

I still take 3 1/2 mg Prednisone and Celebrex daily which keeps the pain tolerable, I couldn't be without my anti-inflammatories.

This journey is not an easy one I must admit, but knowing that I am not having to take those heavy meds anymore makes it all worth while.

I do hope Michael feels better soon and will pray for the MSM to kick in fast to give him some relief from the pain he is having.

………..Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[lynnie_sydney]

Maz wrote:

Minomycin (Japan, South Africa);

……….Australia needs adding to that. That's our brand too. 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)

[Author]

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