HELP! What are we missing??

[kcdrake]

Thank you Phil!!! We’ll talk to her doctor about that…

[Patricia.Ann]

Hi kc 🙂 Nice to ‘meet’ you!

Maz has given such brilliant and supportive advice – don’t know what we would do without her knowledge on here.

Like your mum my RA literally had me in bed in excruciating agony unable to move with my husband having to literally carry me to the bathroom – it was truly awful – and my heart goes out to your mum and you her family having to go through this.

I also saw very little improvement with the minocycline for the first 18months to two years but I believe I was taking too little. I have also been on prednisolone and a strong anti inflammatory called celebrex, also oramorph for quite some time – not good – but my only other alternative was a biologic and I didn’t want to go down that route if I could help it. Now I have to tell you I am still on these but my prednisolone is now down to 6mg from 30mg which I am so happy about. However, it has taken me four years to get to this level 🙁 I tried plaquenil and sulfasalazine and both gave me awful side effects but a lot of people use these drugs and get away with them and if I had been able to tolerate plaquenil then I would definitely have taken them alongside the minocycline quite happily – well I would prefer not to be on any drugs – but those of us with these autoimmune conditions can’t sit back and do nothing.

At the beginning I took 100mg minocycline MWF for about a year, maybe longer and this really didn’t do anything. Of course I am sure now it was because of the steroids and I should have been on a much higher dose from an earlier stage. I wrote to Dr S and he suggested I could start taking 100mg x 2 daily. I shifted up firstly to 100mg daily for about another year and then tried 100mg x 2 for about another six months and I have now come back down to 100mg daily again. My crp and esr have come down as has my RA factor (which I didn’t have at the start of my illness by the way). I believe it can only be the minocycline that has enabled me to reduce my steroid dose and reduce my inflammation levels in my blood. Although I still need my anti inflammatories/morphine and still have a long way to go I am most definitely in a much better place than I was four years ago! I am still working on diet and I think this is a most important part too which I didn’t pay particular attention to in the beginning so it is good to see your mum is.

When Dr S replies I am sure he will give good advice but of course we are all individuals with our own quirks but I wouldn’t give up on the minocycline just yet – and as Maz says most definitely don’t reduce the steroids too quickly – very dangerous. It takes me 7 weeks to reduce 1mg! I reduce 1mg for one day per week and then 1mg for two days per weeks gradually increasing the 1mg drop for an extra day until week seven your mum will be at the new dose. I then hold that dose for at least two or three weeks to see if I tolerate it. It has worked well for me that way 🙂 I found it was a catch 22 situation, just like your mum, because I couldn’t reduce the pred whilst in such agony and I wasn’t tolerating any of the other drugs either so I was stuck unless I wanted to go on the anti tnf or biologics. Of course, if this had been the only path for me to take then i would have done but I really didn’t want to. This has meant that I have been on prednisolone for much longer than I would have liked but I all the people I personally know and diagnosed at much the same time as me have all had something to deal with no matter which drugs they have been on. In fact, I feel that I have managed to ‘hold my own’ although still poorly and I have been grateful for that. I feel the middle to back end of last year I was starting to see good improvement in my blood tests even though I still have pain and swelling, although definitely not as much as previously. It is a fine balancing act for sure but I think if it were me I would try the plaquenil, stay on the minocycline at a dose that Dr S advises, take an anti inflammatory drug that is kinder on the tummy and try to reduce the steroids slowly as long as she doesn’t have a relapse with the pain. I have always found when I start reducing the first couple of weeks I can get more pain before it settles down again.

Probiotics are a must so good your mum is taking those. I have never had a yeast issue since taking minocycline and I take Prescript Assist soil based probiotics at one per day and have also been taking PB8 at three a day. I have recently changed the PB8 to OptiBac every day extra strength and am adding in Boulardii on the advice of the naturopath from OptiBac. I also take a good calcium and vitamin d/mineral supplement called AlgaeCal Plus which is from Canada. A supplement like this is essential when having to take steroids. I didn’t know this at the beginning and didn’t take anything!! I have also added in from the same company Strontium Citrate which is apparently good for building bone strength not to be confused with Strontium Ranelate which is apparently not so good for us.

Sorry for rambling on but I so understand how your mum and you are feeling. It seems a helpless situation at the beginning and when we don’t see improvement after about a year we start to feel a bit despondent. Looking back I had low grade symptoms for many years. In fact I had been going to the Doc for at least two years but nothing showed up in blood tests and I was always sent packing so I think for those of us like that it will naturally take longer to heal. We can only do the best we can but slow and steady steps forward are the way. I look down at my hands now and realise they have gone back to their normal size after looking like boxing gloves. I am able to do so many things now that I couldn’t do when diagnosed. I couldn’t even make a cup of tea or dress myself! I really didn’t want to be on prednisolone at the higher doses this long but I seemed to react to all the other drugs and I just didn’t want to ‘chance’ the biologics – somehow my instinct told me It wouldn’t be good for me – of course I may have been wrong 😉

Please don’t give up hope – keep trying – keep going with the diet – take the meds that are needed to be out of the excruciating pain and to keep the inflammation at an ‘acceptable’ level, perhaps add in the plaquenil, take the probiotics and a good bone supplement and go with what Dr S suggests – these are my thoughts but of course your mum and you know best what is right for
your situation 🙂

I wish you well and send my very best wishes to your mum, you and the family <3

Take great care and please keep in touch.

Patricia xx

[kcdrake]

Thank you so much Patricia,
I have read your response to my mom and it filled her with hope! I know she just feels so alone and desperate. We added azithromiocin to her cocktail and I will be looking into Plaquenil. Your slow but progressive drop in Prednisone is admiring and exactly what we will be doing.

Thank you for your understanding and support. We will keep you updated….

kc

[Patricia.Ann]

Hi kc,

Sorry I missed your note – I have only just looked in again since my last post! Thank you so much for your kind words 🙂 I really can understand your mum’s feeling of desperation <3 I am thinking about you all and hope next time we have contact that you will have some good news about your mama's progress. Until then take great care xxxx

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