Update from Tetra/macrolide and seeing Rheumy 3rd visit

[susanmary]

Hi Maz and All – again I didn’t want to add to my long winded previous update and so complicated anyway the posts are still there if anyone wanted to look at them – Yes Maz I decide to take the 250mg Macrolide (klacid) with the TETRACYCLINE “doxy”50mg twice a day MON WED FRID – it seemed both logical and simpler . I did have those liver enzymes all checked BEFORE I added the Macrolide again seemed a logical thing to do given my previous experiences. THIS is all my GP.

MMMMMMMMM just had 3rd visit to Rheumy she is truly a lovely person I have visited 2 other Rheumy over last 19 years and went no further because they were not particularly pleasant – haven’t we all been there 🙁

Before I had GP visit I had flare from HELLs HELL (so nothing to do with Doxy as on it for 6 months AND nothing to do with adding Macrolide because I hadn’t at that stage.

DESPERATE from extreme pain after 3 days I took prednisone that had been sitting unused from 3 years ago in fridge ( I didn’t want to do the amounts previous rheumy threw at me so there they sat unused) – I did 7 days 10mg first few days then 5mg few days = 7 days then just came off – eased pain ENORMOUSLY no wonder people use it.!!!!!!!!!!
I DO know Dr M used it to help etc. I also know ALL the pitfalls.

**** SO I rock up to Lovely Rheumy after a 3 month wait and FESSED UP – she was very nice about it – I asked if I could use this as a tool for flares PAIN would she be fine with that . WELL she HATES them she said well yes you can and its great they worked BUT I would only want you doing that maximum 3 times a year for a week as the drug binds so strongly even like that at tiny doses.

**** I then asked if i could possibly re try the Plaquenil again but like pulsed 3 times a week ( I was on 100mg for 9 weeks daily and it made me jittery or at least Hubby said so !) BUT it was NO we tried that it didn’t work pain wise so that’s off the list ( my idea was pulsing with antibiotics NOT that she knows I’m on antibiotics except for eye disease ( Hard to navigate these sins of ommission )

***** UPSHOT she gives me script for prednisone low dose AND OH NOOOOOO Azathioprine 25mg – she absolutely does do due diligence of giving me all the pitfalls and benefits and said it really is your choice go away and think about it. IF you trial it have bloods done and see me 3 months if not see me 6 months.

I just want to say here she is one of the kindest specialists I have ever met just not on antibiotic wave length – otherwise she is some sort of saint as she works incredibly long hours I’m not sure she goes home and won’t rush patients – which makes her secretaries SO ANXIOUS its palpable – whenever she says to scretary make an appointment for 4/6/7 whatever they wait till she has taken her next patient in before they have an epileptic fit of HOW DO I DO THAT !!! I just wanted to give her some accolades because we all know we have some MEAN ones out there.

***** THIS has TOTALLY done my HEAD IN as even though I have huge pain factors my ANA is positive only at titre pattern speckled 80 and my ANCA Titre is only around 400 so this is considered low – THIS has only shown in last 3 years out of the 19 years. The 400 reading drops to 30 when I’m on antibiotics yes indeed . It was hard enough convincing myself to take the Plaquenil (yes I pre did eye tests) and only DESPERATION sent me to Prednisone (and bloody WONDERFUL it was so I can now see how people get use to taking it and can’t get off) – SO I just can’t get my head around what to think about. I CANNOT see myself taking AZATHIOPRINE – I would have given the Plaquenil another pulsed go with antibiotic :(:(

**** Flying solo is hard as we all know – I can’t think of one more thing to do have done LDN etc etc etc etc etc etc i COULD possibly get my Dr/GP to up Klacid to 500mg 3 times a week but think I would be pushing her too far and I absolutely CANNOT afford to lose her.

****** Has anyone done Prednisone at my low doses stated say 6 times a year for a week WITHOUT the things my rheumy is freaked out about ?? Maybe even less than a week if it just gets rid of intense pain briefly even 3 days of use anyone done that ????
I know none of us are doctors all just shared experiences !!!!!

I have an entire journal of what I have done in the last 19 years so if anyone wantsto know just ask but NOTHING has worked as well as MINO nd that is an absolute no for me now.

Thank you fellow travellers – Susan

[PhilC]

Hi Susan,

susanmary wrote:

**** Flying solo is hard as we all know – I can’t think of one more thing to do have done LDN etc etc etc etc etc etc

How much LDN were you taking, and how long did you take it?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[susanmary]

Hi Phil – It was at least 7/8/ years ago I was on LDN and from memory I did experiments with GP took 1mg, 2mg , then 3 mg (compounded no additives) I did it for at least 8 monthsevery day .

It caused really bad sleep and “loo” issues even when I switched to morning taking. It didn’t help pain and was very expensive.

I also think that 2014 was the year I had the good break through with “mino” until I ht week 106 . Anyway thanks for imput.
I’m still hoping someone will chip in as well with other comments on my :):):) Many thanks Susan

[susanmary]

ANYONE ELSE willing to comment in on my ***** questions from last Rheumy – especially the using 5mg/10mg prednisone OCCASIONALLY I know Dr Brown was not adverse to this????

I have not tried the AZATHIROPRINE (Humira) tablets – Ive always steered clear of them out of fear?stories and info on them.

i have tried to use the search bar for this but struggling with it.

[PhilC]

Hi Susan,

susanmary wrote:

It was at least 7/8/ years ago I was on LDN and from memory I did experiments with GP took 1mg, 2mg , then 3 mg (compounded no additives) I did it for at least 8 months every day .

It caused really bad sleep and “loo” issues even when I switched to morning taking. It didn’t help pain and was very expensive.

You should probably consider trying LDN again. Here’s why: If you take too much, it won’t help. In fact, taking too much naltrexone could be worse than not taking it at all. And some people can’t tolerate more than 1.0 mg (and possibly even less than that). The fact that you had sleep issues even when you switched to morning dosing strongly suggests that the dose of LDN you were taking was too high (for you).

As for the cost of LDN, did you know that you can make your own? It is easy to prepare liquid LDN using 50 mg tablets of naltrexone. Instructions are available online. Besides the reduced cost, another major benefit of using liquid LDN is that dose adjustments are very easy. I started out taking just two drops (about 0.1 mg) per day, and gradually increased the number of drops that I was taking.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[PhilC]

Hi Susan,

susanmary wrote:

Has anyone done Prednisone at my low doses stated say 6 times a year for a week WITHOUT the things my rheumy is freaked out about ?? Maybe even less than a week if it just gets rid of intense pain briefly even 3 days of use anyone done that ????

I’ve taken 5 mg of prednisolone a few times, but not continuously. So far, I’ve avoided taking it even two days in a row. I considered taking more (up to 20 mg or 25 mg per day), but at the time I didn’t think I needed that much, so I only took 5 mg.

There is an alternative to prednisone that is safe to take continuously (at the right doses). It’s called hydrocortisone (cortisol).

I posted a message about it back in 2014:

Low-dose cortisol (hydrocortisone)
https://www.roadback.org/forums/topic/low-dose-cortisol-hydrocortisone/

Unfortunately, most of the links in that post are dead. However, the very last one is still working.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[susanmary]

Hi Phil – yes I had been thinking of maybe trying the LDN again and again at 1mg . I did do a LOT of research on it when it was first suggested to me by GP years ago as I had only heard of it for overdose etc ENTIRELY different I know !
Do you mind me asking if you use it everyday or have even pulsed it with antibiotic pulsing ? OBVIOUSLY you don’t have to answer that !

YES I will look up those links on Corticosteroids – I have heard of Hydrocortisone – I only did the cortisone (prednisone) for one week in my life – that is the ONLY time I tried it. It was a particularly shocking flare – I only took 10mg I think 3 days “ish” then “5mg” 4 days then straight off them – MY GP is perfectly okay with using it this way( because she knows how careful I am) even if it was a day or two here and there at very low dose.

POOR Rheumy really threw me because she hates them she admits they are good but she just says they never leave system EVER and she would say I can only use them 3 times a year maximum at 5mg -10mg for one week. I was EXTREMELY surprised she gave me script for AZITHROPRINE 25mg to try (which I haven’t yet and knowing me probably won’t) but with all the warnings at least she isn’t pushy or condescending actually very kind but not an Antibiotic pulse script giver WASN’T rude about it though – which I hear from so many people here and on FB group .

SO I WILL look up the links you kindly sent 🙂

I’m still taking Doxy 50mg x2 MON WED FRID and Macrolide 250mg MON WED FRID is VERY helpful with eye issues but not so good with the pain side but so far no ballistic liver enzymes .

Many Thanks
Susan

[vinny]

The last few months I have been using 10mg of Prednesolone. It helps my psoriatic arthritis and back spasms. I suspect I also have adrenal insufficiency, but would have to go off it to do a cortisol lab test. Last week I started 1mg of Dexamethasone and weaned off predesolone. Dexamethasone is 6 times more affective and stays in the system twice as long.

Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008

[PhilC]

Hi Susan,

susanmary wrote:

Hi Phil – yes I had been thinking of maybe trying the LDN again and again at 1mg

If you start at a lower dose, like (for example) 0.1 mg, it will give you more experience seeing how your body responds to different levels of naltrexone. You’ll be able to better determine which dose is best for you. If you increase your dose and notice that you start having trouble sleeping or whatever, or you don’t feel as well (e.g., more pain), then you’ll know that you should probably go back to your previous dose. That’s the strategy that the better doctors use, and it’s the one that I use (since it makes a lot of sense).

susanmary wrote:

Do you mind me asking if you use it everyday or have even pulsed it with antibiotic pulsing?

Although you can pulse LDN, I would not do it unless you’ve been taking it for some time and it’s working very well for you. As far as I know, most doctors do not pulse LDN. However, I have read that some people take it that way.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[mary77]

Hi Phil and Susan,
I haven’t posted here in a LONG time, but saw the information about LDN. Thanks, Phil…just what I needed to read. I have had a similar journey as Susan. Minocin was the only thing to keep me stable. Then my body started to react to it. I am now taking zithromax (250) 3 times a week. I have also been on LDN since November, 2022. I started at 1.5 mg (often recommended at that dose). Did alright with some adjustments in sleep happening. Then I gave in to the common thought of increasing the dose! Have tried on 3 different occasions to increase the dose to 3.0 mg. The increase in pain was significant. Overall, I felt much worse. I am back to 1.5 mg but also wondering if 1.0 would be enough for me. My body, after 40 years of Lyme induced RA, has become extremely sensitive to meds. Why I tend to forget that when trying something new is unexplainable!! Thanks, Phil, for sharing your experience with LDN. Good luck to you, Susan.

[susanmary]

Thanks guys for answering – Yes I only upped the LDN (8 years ago ) when 1mg wasn’t helping pain wise but yes 2mg then 3mg didn’t help pain either for but caused other problems . ANYWAY something to re think about .

At this stage of my disease having never done it (apart from that one week) I would consider using it occasionally a couple of days in a row at 5mg or even the Hydrocortisone . I know its considered safer but have been told by tree different people that if you are using the equivalent in dosing – it has the same long term effects. I would NOT be taking it constantly as I know all the downsides so that isn’t an issue – it was really the Rheumy not even liking it VERY short term that threw me when I had finally decided the occasional few days in really bad times or for a trip would be “OK” . SO IRONIC as over the many years I have had several scripts for prednisone etc and always chucked them out as too scared to use !!!!! ON ON guys and thanks for answering -Susan

[PhilC]

Hi Susan,

susanmary wrote:

At this stage of my disease having never done it (apart from that one week) I would consider using it occasionally a couple of days in a row at 5mg or even the Hydrocortisone . I know its considered safer but have been told by tree different people that if you are using the equivalent in dosing – it has the same long term effects.

What those three people told you is not correct, and the reason it’s not correct is because it’s only partially (conditionally) true. It’s only true if the daily dose of hydrocortisone is greater than the amount of hydrocortisone that’s normally produced daily by the body, which is about 35 mg to 40 mg. The most common dose used by Dr. Jefferies in his case studies was about half that. That’s why the therapy is called “low-dose cortisol (hydrocortisone)” — because only doses of hydrocortisone that are sufficiently low can be safely taken on a long-term basis.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[susanmary]

Hi Phil – yes that is my feeling from research as well. Also the fact that i would be using it as a “add on” occasionally for a few days at very low doses. I have a call with my GP (ordinary GP) today – thanks for imput :):):) Susan

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