Prednisone while on Mino

[Maz]

@Robert wrote:

thanks for that info Maz and Lyn am sure this horrible disease can be surpressed and now i have some people with the same problems i am sure together we will prevail,,,,,i had a flair the other day it went for my left sacroiliac joint jee that was painful, it has never went for that joint before hope its the last port of call for it, anyway 10mg pred and 4hrs later i was ok its not came back,,got to admire the tenacity of the ra,,kinda funny too its a busy lil disease hey lol 🙂 .

Robert, can you share how you were diagnosed with RA? If you’ve mentioned this already, I apologize, but were you diagnosed based on positive labs for RA (rheumatoid factor, anti-CCP, SED rate and CRP) or just by symptoms? Has your ANA ever been positive (and, if so, what pattern)? If not, your mention of your sacroiliac joint has me wondering if you might be dealing more with a reactive arthritis/spondylarthritide. Has anyone ever investigated this for you? If not, it might be worth asking your doc to check for the HLA B27 gene, as this can help (if positive) in terms of guidance for diet type to follow. Folks with spondylarthropies generally feel better eliminating all starches, for instance.

Btw, I came across the following article and thought you might find it interesting in light of your own journey:

http://www.rheumatologynetwork.com/articles/latent-tuberculosis-infection-ra-disease-and-diagnosis

Isn’t it interesting that RA is a type IV hypersensitivity (delayed) reaction and Brown described it as a disease caused by “bacterial allergy.” The tuberculin test where they scratch one’s arm with some of the TB toxin is an example of a delayed hypersensitivity bacterial allergy, causing those with TB to react.

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

http://www.drugs.com/dict/bacterial-allergy.html

[Robert]

Hi Maz,,sorry i didnt say how i was diagnosed with R.A,,,oh it all started with the bottom of my back in 1993 but i did say i have had lots of infections growing up so think thats when it really started i guess,,got gradually worse then the big guns came out when the docs started doing rhizotomies on then epidural nerve blocks ,,only once did the pain go when a rheumy injected the sacroiliac joint on the right with steroids,,a month later it started on the left they done the same on this side but it didnt work so it went from there i guess,,anyway my left hand started to swell but the docs said it was coming from my back,,this is 2007 now,,,it got that bad i couldnt even put the key in the door to open it both hands were now involved,,anyway my gp run tests for a lot of things that could cause thia and the blood work came back positive for RA,,,r.factor was 926 and crp was 247 ana was normal think sed rate was 40,,thats when it all started i was referred to a rheumi,,he started me on 5mg pred,,methotrexate 25mg weekly and humira self injected once a week,,,the swelling did come down after some weeks but i developed a dry unproductive cough which was very irritating,,i didnt know what it was but a few months later i had difficulty breathing,,,i went to the a@e.and they put a device on my hand and immediately the alarm went off seems i had problems with my lungs,,anyway i was rushed into a ward and started on iv anti biotics and 100mg prednisolne and transferred to critical care what a night mare that was,,,anyway to cut a long story short apparently i had what they call Methotrexate Lung,,,oh i did recover but it took months,,,then thats when i was started on the biologics,,,rituximab was the first one ,,,oh i was negative for the b27 gene Maz.. def.Ra.,,,my older sister had diagnosed in the 70s but i never thought i would get it,.well you dont think it could happen to you i guess.

[Robert]

I meant the sacroiliac ligaments he injected and it was great relief,,as you know r.a attacks the connective tissue to,,think you picked me up wrong about the tb.Maz….what i meant was i overheard the doc talking to his interns saying i had T.B….Ididnt think i had and told him this and to give me anti biotics which he did,,,,yes i had chicken pox when i was young and your right surpress the immune system which they did with imuran and it returned so i got the shingles,,very very painful,,,apparently what i done was to remove the sentries and let the cat out of the bag so to speak,,thats why i know you cant just go for one inflammototy cell like the tnf blockers you have to surpress them all,,,and the only drugs i have found extremely effective in doing this is prednisolone and an illegal one at present here,,,,they can say what they like about prednisolone but if its kept at a low dose 10< then hopefully it dosent do too much damage ,,well according to the studies i have read anyway. also i see an endrocoligst last one everything was fine i have a follow up in june and he will compare the results with last years results so will have a better idea then if pred has done any damage to bones etc,,,,,i had low vitamin d. levels the last time and all the years of treatment with various rheumis and even a professor not once did they check my vitamin d. levels,,,and as you know vitamin d. is low in the majority of R.a.cases and nobody could tell me why this happens.

[Robert]

i meant to say also before i was diagnosed my weight climbed ,,,the first rheumi i saw said after he prescribed pred ,methtrxate and humira told me i would lose weight,,,yes i certainly did that,,,some 25kg,,,apparently it was all the fluid caused by the inflammation well he never did tell me as i changed rheumis after the lung prob with methotrexate.

[Maz]

@Robert wrote:

anyway my gp run tests for a lot of things that could cause thia and the blood work came back positive for RA,,,r.factor was 926 and crp was 247 ana was normal think sed rate was 40,,

i had what they call Methotrexate Lung,,,oh i did recover but it took months,,,then thats when i was started on the biologics,,,rituximab was the first one ,,,

oh i was negative for the b27 gene Maz.. def.Ra.,,,my older sister had diagnosed in the 70s but i never thought i would get it,.well you dont think it could happen to you i guess.

Hi Robert,

Thanks for filling in the deets!

The cogs are turning in my brain as a CRP that high might be more consistent with an active infection, but I’m also unsure of the lab’s parameters for it’s measurement (247 in an Aussie lab may not be equivalent to the standard measurement in the US). Rheumatoid factor can also be elevated in TB and other infections. E.g. mycoplasma pneumoniae can result in significant elevations of RF as a post-infectious sign.

http://www.webmd.com/rheumatoid-arthritis/guide/rheumatoid-factor-test

Is rheumatoid factor positive in other ailments?

The rheumatoid factor test may be positive in people who have other autoimmune diseases such as systemic lupus erythematosus (lupus) and Sjogren’s syndrome.

Rheumatoid factor can also be positive in people who suffer with infections. These may include hepatitis, mononucleosis, tuberculosis, and syphilis. Patients with cancer and may also test positive for rheumatoid factor.

Remember, positive results from the rheumatoid factor test do not automatically mean you have rheumatoid arthritis. Rheumatoid factor may be positive in some healthy individuals and negative in people who actually have RA.

So, while RF and CRP can assist in diagnosis, it complicates the picture when there is an underlying latent infection, like TB. It’s just the mention of your symptoms starting with back and sacroiliac pain that have caused me to wonder. I’m just a fellow patient, but there are some common “key” phrases people with certain rheumatic diseases seem to bring up and sacroiliac pain can be consistent with spondylarthropies and there is a population of people within this group – 10% – who may be seroneg for HLA B27. More confusing still…it’s possible to have overlapping rheumatic diseases that can create an even muddier picture as autoimmunity can and does run in packs for many (more than one AI disease) and also within families (e.g relative with the same or a different AI disease…one of my brothers has MS). Dunno….just some ideas that popped into mind that may or may not be relevant or helpful. 😉

The TB link above talks about nodules in the lungs being typical for RAers with TB…interesting that Brown believed that nodules were the body’s attempt to encapsulate and wall off infections.

[Robert]

Yes Maz i know what you mean,,however i also have the rheumatoid nodules one in my left arm but not near the elbow joint,,also have 2 nodules on both legs not near any joints just on the soft tissue,,also i have 2 just under my rib cage on the front of my chest classic signs of r.a.so am told, also the nodules apparently are a good indication of the severity of r.a.,,,thot i would also say this,,,,yesterday i cut the mino from 100mg twice a day to 50 twice daily,,,last night the night sweats stopped jeezuz lol 😕 ,,,i dont know maybe 100mg is to much,,,will hold on the 50mg for a few days and see what happens,,maybe trial and error Maz will wait and see.

[Maz]

@Robert wrote:

Yes Maz i know what you mean,,however i also have the rheumatoid nodules one in my left arm but not near the elbow joint,,also have 2 nodules on both legs not near any joints just on the soft tissue,,also i have 2 just under my rib cage on the front of my chest classic signs of r.a.so am told, also the nodules apparently are a good indication of the severity of r.a.,,,thot i would also say this,,,,yesterday i cut the mino from 100mg twice a day to 50 twice daily,,,last night the night sweats stopped jeezuz lol 😕 ,,,i dont know maybe 100mg is to much,,,will hold on the 50mg for a few days and see what happens,,maybe trial and error Maz will wait and see.

Yup, much of this is trial and error and the typical dosings are just basic guidelines, so everyone has to find their comfort zone…or tolerance level.

There’s a decent section on nodules in the book, Robert, if you’ve got a copy and have a min to check it out….Brown correlated elevations in strep titers with nodules. I have a history of strep, too, and I’ve found that whenever I go on an extended course of bactericidal abx, like penicillin, they eventually disappear. Yes, does sound more like RA and folks with RA can also get pains in the sacroiliac area, as well….it was just a crazy thought in light of the high RF and CRP, but you could also be dealing with rebound and herxing, both of which can cause the labs to worsen.

There are other abx you may be able to switch to down the road or add to the mino, if needed, so plenty of scope to tweak things if needed. Keeping all fingers and toes crossed for you, Robert!

[Robert]

Thanks Maz thats kind of you,,do you know i have learned more on this site about RA. in the last few days than i have learned from all those so called specialists since i was diagnosed with the disease,,,they dont tell you nothing just to take the junk they prescribe you,,,personally i think thats coz they know very little,,i believe you have to concentrate on RA alone which Dr.apparently did,,but unfortunately rheumis and the like deal with a whole host of diseases and the thing is according to them the treatment is much the same for most of them,,maybe not enough money in it for them just to study one particular disease,,,i am a diesel mechanic to trade and specialised in c.i.engines nothing else so became pretty good at diagnosing the problems when things went wrong,just a pity i couldnt find a doctor or a rheumi who also has RA that would help i guess,,,,

[Robert]

Oh yes i have the book Maz and very informative it is too,,yea the high rheumatoid and crp was before i was diagnosed and i wasnt being treated i knew there was something wrong but didnt know what,,i always felt weak and my grip [hands] was diminished also feet were sore,,thats when gp got tests done and positive high r.a.factor and crp came to light,,,referred to a rheumi then few months after treatment with 5mg pred,25mg methotrexate and weekly injection of humira,,,the breathing problems started,,,they called it methotrexate lung,,,oh so they have studied roxymicin and concluded a significant improvement oh thats one to fall back on then Maz,,many thanks for that info.

[MEmily]

Dear Maz

I would love to contact the DrS you mention, I’d love some more advice about my RA, especially from a doctor who is well-versed in antibiotic therapy. But I live in the UK, so that might be not so practical.

Thanks for asking about the mix of meds I’m taking. The methotrexate was prescribed to me by a rheumatologist, Dr J. The Minocin is prescribed by a private doctor, Dr E. Both docs know about the other and what I’m taking. Dr E was recommended to me by a member of Roadback. Both docs are ok with the meds the other has prescribed. In fact, Dr E said that I should definitely carry on with methotrexate. Dr J doesn’t rate minocin at all, but she says it won’t hurt and it won’t interfere with mtx. This seems to be the only way I can access minocin in the UK.

When I upped my mino dose to 5x wk, it was on Dr E’s recommendation. He says that when I start to feel really well again, then I should try to gently cut back on the mxt to see if the mino’s taken effect yet. I’m not feeling well enough yet to do that. I’ve been flaring quite a lot recently. They do go away, sometimes with and sometimes without prednisolone. What I really need to know is this: am I herxing? Can a herx really last several weeks? Am I finally seeing the beginning of the end of RA?

Dr J wants to add either hydroxychloroquine or sulfasalazine into my mix because she’s concerned about the flares. I don’t want to take either of these, expecially if the flares are some sign that the mino is finally taking hold. Do either hydroxychloroquine or sulfasalazine have worse interference with mino? I am getting conflicting advice, true, but this whole RA treatment thing is so often trial-and-error, I’m sure I’m not the only one who’s just trying their best.

I’d like to know if anyone else out there is having a similar experience to mine, and trying to mix mino with methotrexate.

[Robert]

Hi,
has anyone had the pneumonia vaccination who has been diagnosed with RA,,i have a prescription to get it done but i am a bit unsure as some uk gov.sites say that it dosent really work and they have stopped advocating it,,any feed back would be much appreciated.

[Trudi]

@Robert wrote:

any feed back would be much appreciated.

Hi Robert–
Here is a recent thread on vaccines and autoimmunity. Reading it will provide you with information in your decision making: https://www.roadback.org/forum/viewtopic.php?f=1&t=12686

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Robert]

hi all
just a thought on the use of multivitamins/probiotics etc,regarding multivitamins firstly,apparently after many studies multivitamins really do nothing apart from the placebo effect which is good as long as you are happy with this lol,seems the onli good they might do is for people on poor diets and maybe the elderly who have difficulty eating a balanced diet,i saw a programme on tv here last night and was surprised this is a multi billion dollar industry [jeezuz 😮 ],,anyways i was watching the dr.oz show and he certainly did advocate their use,seems after some research dr.oz gets paid from drug companies to do this,read some articles on this,i was going to buy some but was shocked at the price,some $45 for a months supply or so,glad i didnt, in regards to pro-biotics done some research on them as well,,seems the fda will not allow the word pro-biotic or pre-biotic to be put on the labels,Canada and a few other countries have taken a similiar stance,,seems maybe there is a lesser case for them due to C.diff. in the gastro tract, i did buy some of them but not sure i done the right thing,,,will just say Dr.Brown probably didnt use them reason being they were not available at that time and they seemingly they didnt interfere with his work, well i cant find anything that realates to it,,i dont know about you guys but i personally think the above are just another way of worming the money out of people like us,just my opinion however,these pro-biotics are also expensive surely if anti-biotics destroy natural good bacteria then goverments must know this and i think it be unlikely they would hold this information from the general public for no good reason,personally i have had no or very little trouble with my gut since starting AP protocol,,but if it does happen i will update,,does anyone have any feedback on the above,would be appreciated.Many thanks.Robert.

[Trudi]

@Robert wrote:

does anyone have any feedback on the above,would be appreciated.

Hi Robert–
Here is a recent thread about supplements being questionable: https://www.roadback.org/forum/viewtopic.php?f=1&t=12631&p=78937&hilit=methylation#p78937

From my own experience, treating my MTHFR with the correct supplements was a life changer. If you do a search on the General Page for MTHFR you will come up with a lot of information.

Personally, I don’t think supplements are necessary if one is healthy and gets their needed nutrition from food. But, if for numerous reasons you are nutritionally deficient, your body will not have the material to heal. Getting the correct balance is key–not too much/not too little.

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Robert]

Hi Trudi
Many thanks for that info very helpful,really hope you are on the right track now,,yes and i think you are right,,,,just an update on my use of Mino,,personally i beleive they are working for me now, however the night sweats are continuing also i have developed thromboypenia on both arms,i done some research and found Mino does cause this and also can cause pneumonia as previously stated, i get my blood results today so will update if my platlets are low, has anyone had this experience using Mino,apparently doxycycline does the same,i also have a copy of the Bnf book the one doctors in the UK refer to when prescribing to their patients and very informative it is,it describes to a tee all the side effects of medicines they use there,,in case of Mino and most of the tetracycline apart from the usual side effects it does state Mino does cause Blood Disorders but dosent say discontinue if this happens,,also i get diarreah with Mino to a lesser extent so unsure what to do,,any advice on the above would be appreciated,,,i know Mino is helping no doubt about it, i have even cut my prednisolone from 10mg to 7.5 mg with no rebound so far,and i am not stiff in the morning i can open and close my hands no problem,shoulders,elbows,knees,feet are also good,been a long time since this has happend so i am really pleased, its just that the night sweats and now the blood seem to be affected. any help with this would be much appreciated,,i will have another look in the meantime to see if the other anti-biotics also do this and update what i find. Robert.

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