do i need clindamycin???

[Randy]

@claireh wrote:

When you say every day does that mean 7 days a week or 5 days nothing at a weekend?

Claireh,

Yes, 7 days a week.

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"

[claireh]

hello all,
just checking in with good news, i have been on the mino for 8 months now and my Dr has put me on Azithromycin to go with it. Its working like a dream i feel really well my energy levels are nearly back to normal and my skin is sooo much softer than 8 months ago actually than 3 months ago, things just seem to be getting better and better. I can’t thank everyone enough for their kind words, support and guidence. My face and chest are lovely and soft now and my arms are much softer, my hands are still very hard and my fingers are still contracted but it is early days and i am hoping this will get better in time.
AP is fabulous and definately does work if done properly.
Thanks again to everyone on RBF and Dr Brown who did this groundbreaking reaserch in the first place.
i am looking into opening a support group for people with auto immune disease to come and share their experiences.

God bless all of us.
claire. xxx

[Patricia.Ann]

Hi Claire,

It is just lovely to read about your journey with AP and how it has made you so well. Very encouraging to me who is just starting out. I also live in the UK – North East – and realise how difficult this must have been for you trying to get help with the medicines and support.

Did you go and see Dr H in Guildford? Did you find this beneficial? I have a wonderful Rheumatologist who is willing to discuss AP with me at my next appointment in September. Guildford is a very long journey for me as I feel at the moment. However, I suppose we do what we have to do to get better.

How wonderful for you, your husband and little one that you are well again. Well done you for being so proactive. I think the support group is a fantastic idea. The NHS is so cash strapped that there isn’t really anything like that available. The only way is to help each other. What a great feeling that would be.

Take very good care and very best wishes.

Patricia x

[claireh]

Hello Patricia,
it has been a very bumpy road but i really feel that now i am going in the right direction. It’s lovely to speak to someone from the uk… and yes it has been difficult to get medicines and support. My own GP supports me with AP and is amazed just how well i am doing. I did make the 450 mile round trip to see Dr H in guildford he is the most wonderful, kind and patient man i think i have ever met. He is very helpful and gives great advice and answers all of your questions honestly. His private consultations are very reasonable too. It was very worth while for me to go to Surrey as i was leading my own AP and needed to get some peace of mind that what i was doing was correct, he is very reasuring and surrey is a lovely place to visit. Lovely pub lunches next door to Dr H’s surgery. 😆

all the very best to you and if you ever come to my neck of the woods be sure to contact me.
god bless claire.xxx

[Patricia.Ann]

Hi Claire,

Seems like it is Dr H’s I must go to especially with a pub lunch in sight!! Eating is my favourite pastime 😆

It is fabulous that your GP is supporting you. A rare find I think! It really is wonderful to hear how well you are doing. Well done you Claire for sticking with it. I know how hard it must have been for you because our system doesn’t support this route. Thankfully, we have people like your GP and hopefully my Rheumatologist who are prepared to help us. I just can’t understand why AP isn’t promoted more within the NHS. When I mentioned it to my rheumatologist he knew about the ‘tetracyclines’. I would love to be well again.

You take very good care Claire. Would love to meet up one day.

Patricia x

[claireh]

Hi Patricia,
Yes my GP has been wonderful, he is lovely and very good. You will get better again I know that, AP does work you just have to stick at it. I was taking minocin for 6 months before I noticed real changes. Dr H is very good and he really reasures you that this works. You will know yourself when things are working for you and when they are not. You can also email RBF doctors for advise they are very helpful. This board is so helpful and everyone is so supportive. You will get through this Patricia, and its worth seeing a propper AP doctor if you can. Let me know how you get on.
Take care.
Claire. Xxx

[Patricia.Ann]

Thank you so very much for your support Claire. Lovely to have contact with you. I will keep in touch.
Love Pat x

[claireh]

Hi Pat, was just wondering how you are getting on? please keep in touch.
I have been on minocin and azithromycin now for nearly 10 months. wow what a difference, don’t get me wrong i still have a good way to go but i feel really well and my energy levels are almost back to normal which is just great. My skin has softened loads and am leading a very near normal life again thanks to AP. I thank the Lord every day for guiding me to AP.
Hope you are well.
Claire.xx

[claireh]

i forgot to mention which is very significant… my last iloprost infusion was in June (which i have to say i was dreading after 7 attempts to cannulate me in february) well it was great they cannulated my arm first time and it stayed in for the whole 5 days. How good is that. Just shows how much better my skin is now after Minocin. This stuff works, thank you RBF and Dr Brown god rest his soul.
claire. xx

[Patricia.Ann]

Hi Claire,

How lovely to hear from you again. It really is 😀 How fabulous that you are continuing to do so well. You must be really, really thrilled about that. When we have been so poorly ANY improvement is a bonus isn’t it? To have your iloprost infusion with such ‘little fuss’ is brilliant. You must have wanted to jump up and down with joy . What an amazing achievement in only ten months. Well done you. It also makes such a difference to family life when we feel well. I am just so happy for you Claire.

I am STILL waiting patiently (!) for my appointment with the Consultant. I have had to come off Hydroxychloroquine because it was making my hair fall out at a rate of knots, also blood shot eyes and they felt as though they were bulging. Very strange!!! I am still in a lot of pain with swelling and stiffness. I am grateful for the medicines I do have though as they make the pain bearable. I have tried to get an earlier appointment than the middle of September but they no can do. Oh dear. So very frustrating. It has given me time though to get all my info printed off for him and I am hopeful I will get started straight away. I am going to see how I get on and then if I have problems I will go and see Dr H in Guildford. Also thought about going to see a Naturopath in Preston. Quite well known and reputable. I have failed two Dmards now so the next step would be Biologics and I certainly don’t want to go anywhere near them if I can help it. They scare the life out of me.

Claire, what probiotic do you take?? I am searching for the right one. Have found a couple.

Claire, your happy news has made my day. You take great care.

Pat x

PS: Nice to hear you have found your faith. Me too!!! PM me anytime you would like to…x

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