Blood Results

[Patricia.Ann]

Hi everyone 😀

Went to the Rheumatologist today for my blood results. My CRP is FOUR!!!! Now this is brilliant news. My ESR is still 25 though and I do have a lot of pain and swelling, my roadback is by no means over!!! My autoantibodies that were ‘attacking’ my liver are now negative. That I find the most amazing of all. My IGg is going down although I don’t know what this means – duh. I started out just over a year ago on minocycline 100mg x 3 weekly. After many months this didn’t improve anything. I wrote an email to lovely Dr S and he ‘suggested’ 200mg 2 x daily. I couldn’t tolerate this but I have managed 100mg daily for the last six months hence the better blood results. My prednisolone is at 7.5mg, but down from 30mg two years ago, and I have tried recently to reduce to 5mg but I struggled big time.

Unfortunately, my ferritin levels are low at 17. My rheumatologist is sending me for something called ferinject which seems to be an infusion of some sort. He said it could be the mino with it’s chelative effect that is causing the low ferritin levels. Now just not sure about this. I always leave a two hour window after taking mino before taking any supplements or other medication. Does anyone know of mino causing low ferritin levels??

I am still quite poorly but the blood results have given me a boost. Perhaps, this is the start of something brighter 🙂 Does anyone have any thoughts on supplements I could be taking that would help me further? Perhaps I need to detox more? I have read great things of LDN but I take oramorph and I think this shouldn’t be taken together.

Without the support of you all on this forum I am not sure where I would be healthwise or how I would have coped emotionally. Everytime I have had a problem up would ‘pop’ someone ready to share all their knowledge with me. You are just a kind, caring bunch of people that I am so grateful to 😀 Sending a great big hug to each and every one of you…..

Love Patricia x

[Maz]

Hi Patricia,

Congratulations on the improved labs! Sometimes labs will improve before symptoms and you are still fairly early days in terms of achieving remission….but you are well on the road now and moving in the right direction. Btw, a SED of 25 isn’t too bad and tends to be higher in women, with age and where there is anemia. Here’s an explanation of how this number is read on Wiki:

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

I am wondering if the oramorph (oral morphine) may be a part of a pain syndrome you are experiencing?

As for ferritin levels, the following study actually concludes that minocycline alone will have no effect on ferritin expression. There are probably other studies out there on minocycline and ferritin that you can research, but this is just a quick one I pulled up…a study using minocycline for its protective effects post-stroke.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2782944/

Minocycline increases ferritin expression in cultures treated with iron

“Ferritin expression was increased tenfold in cultures treated with 10 ?M FeSO4 for 24 h, compared with sham-washed controls (Fig. 3). In cultures treated with FeSO4 plus minocycline for 24h, the mean ferritin level was 17-fold higher than controls, and was significantly increased compared with the mean value in cultures treated with FeSO4 only. Minocycline treatment alone had no effect on ferritin expression (relative density values: 0.179

[Patricia.Ann]

Maz you are an absolute gem 😀 Thank you for all that info. I will have a really thorough read of it tomorrow and then do my research.

My rheumatologist is a good guy. He is really, really pleased with my blood results and is more than happy to keep me on the minocycline. No mention from him of wanting to start me on any other drugs. One thing he did say was he only likes to change one thing at a time. We are having this ‘iron infusion’ first to see if this helps my pain. Apparently, he says that low ferritin can cause muscle and joint weakness/pain. It would be brilliant if it eased it some.

Yes Maz, you have a great memory, my autoantibodies predispose me to Primary Biliary Cirrhosis. I am sure these were the autoantibodies that my rheumy has today told me are now negative. I am completely amazed by this. This can only be the minocycline. My heart just tells me I am on the right track but just need lots more ‘groundwork’ to fine tune everything. Like you, I was very, very sick unable to move and in excruciating pain – and it is sometimes easy to forget how far I have progressed. Although I lead a very ‘basic’ life because of my health problems I can now drive again, enjoy coffee out with my husband and friends, cook tea. All the things I thought I would never be able to do . I suppose we all want our ‘old life’ back as quick as possible but we must be patient 🙂

I wish you well with your continued recovery Maz and thank you once again for taking the time out of your very busy life to help a fellow sufferer. You will never know how much that means to me 🙂

Love Patricia x

[Trudi]

@Patricia.Ann wrote:

Unfortunately, my ferritin levels are low at 17. …Does anyone know of mino causing low ferritin levels??

Hi Patricia–
Ferritin levels are also a sign of inflammation. Minocycline can be a factor in the reduction of inflammation so it could be a factor.

The reference range for my lab for the ferritin blood test is 10-232. I have kept check of my ferritin levels for many years because of the possibility of hemochromatosis (iron overload). I felt my best when my ferritin was at 11. Everyone is different, but I would sure like to have your readings 😀 . My current numbers are 116 but have been as high as 266.

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?

[Patricia.Ann]

Thank you Trudi for spending the time to give me that information. My Rheumatologist thinks 17 is too low a level!! To be honest I hadn’t got a clue about ferritin levels until he mentioned it to me. Never ever heard of them 😯 He is sending me for something called ferinject to boost my levels. Just hope they don’t become too high – oh dear. This is all a very fine balancing act isn’t it??

Warmest wishes

Patricia x

[Trudi]

Hi Patricia–
Here is some additional information I found when I googled “recommended ferritin levels”–
http://www.livestrong.com/article/439229-good-ferritin-levels/
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?

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