Is anyone like me?

[Rosey UK]

Hi,
I’ve had a good break from my lethargy due to haveing steroid injection for the summer. I also started back on hydroxychloroquine (plaquinel ) at the same time. I felt great for over three months which is unusual for me and wondered if the plaquinel were really working well.
Actually looking back on my diary I had logged a flare-up, but soon felt well again something I’ve never felt in the many years of all this except for high dose preds or steroids.
But it’s back I’m ill again I feel like I have ME, I do know how that feels because I had that forty years ago.
Does anyone else have it continually all day every day? Because I can’t stand it any more.
Rosemary 🙄

[PhilC]

Hi Rosemary,

I noticed that you are waiting for your rheumatologist to agree to prescribe minocycline. You may end up waiting for a very long time. I think you should seek out a different doctor to prescribe minocycline (or another antibiotic) for you. Rheumatologists, generally speaking, are not known for being very open minded toward antibiotic therapy.

Phil

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

[ablegirl]

Rosey,

I had two steroid injections within a short space of time, felt great obviously but oh dear when the effects of that cortisol wore off I was completely down, didn’t have energy to lift up my head from pillow. If you look at the actual physiological effect of what that extra cortisol does then it becomes clear why you would now be feeling like you are. a good analogy would be to think of a salmon which when it needs to spawn it travels back to its place of birth covering hundreds of miles up river fighting against currents, jumping over rocks etc. What allows it to complete this amazing feat is its body starts to produce large amounts of cortisol. When it actually reaches its destination and spawns it dies, it is completely spent, worn out due to the excess amount of cortisol the body has produced. When a human takes cortisol the effect is no different.

[Rosey UK]

@PhilC wrote:

Hi Rosemary,

I noticed that you are waiting for your rheumatologist to agree to prescribe minocycline. You may end up waiting for a very long time. I think you should seek out a different doctor to prescribe minocycline (or another antibiotic) for you. Rheumatologists, generally speaking, are not known for being very open minded toward antibiotic therapy.

Phil

Hi Phil, no I know my rheumatologist won’t prescribe them she made that quite clear, that’s why I sacked her. But my GP who thinks its a good idea having the abx can’t prescribe them because of them being long term.
Hope you’re doing well!
Rosemary

[Rosey UK]

@ablegirl wrote:

Rosey,

I had two steroid injections within a short space of time, felt great obviously but oh dear when the effects of that cortisol wore off I was completely down, didn’t have energy to lift up my head from pillow. If you look at the actual physiological effect of what that extra cortisol does then it becomes clear why you would now be feeling like you are. a good analogy would be to think of a salmon which when it needs to spawn it travels back to its place of birth covering hundreds of miles up river fighting against currents, jumping over rocks etc. What allows it to complete this amazing feat is its body starts to produce large amounts of cortisol. When it actually reaches its destination and spawns it dies, it is completely spent, worn out due to the excess amount of cortisol the body has produced. When a human takes cortisol the effect is no different.

OMG what an analogy! That’s scary, but there must be some truth in it.
Rosemary

[ablegirl]

Hi Rosemary,

Sorry after reading back my email it did sound a bit harsh. I’m not judging you this disease is horrible and the pain terrible and I wouldn’t judge anybody for trying to find relief from it and of course cortisone does that it is a very strong anti-inflammatory hormone. But nonetheless the fact remains it is a stress hormone and increasing the amount that is in your body is creating a stress response. But hey every drug has a side effect and you just need to be informed of what you are taking and what side effect to expect. I was just trying to explain why now you are feeling so lethargic as the the false sense of power steroid creates has left your body. Not too say that you will not readjust.

I definitely do not have all the answers but after quite a lot of study I understand the theory.

Lots of love

[Rosey UK]

Hi Ablegirl,
No not at all, I think you’re right about cortisone. I can understand you feel that way. Sometimes we need someone to make us realise what we’re doing.
I wish I could find something else to take that’s not dangerous!
I read Dr Sherry Rogers book well some of it so far. She gave up night shades. I’ve cut out potatoes and anything that has potato starch like gravy powders. I’d cut out the other night shades a long time ago but thought I was ok with potatoes so I’ll see.
Can you imagine you only have to give up nightshades and your cured! 😆
Glad of your help!

Rosey uk

[ablegirl]

Hi Rosemary,

Just seen your location, lucky you Poole, Dorset such a nice part of the country. I have a sister in Wareham so I get down that way quite a bit. I think this disease has so many different aspects to it it is so multi-faceted. Diet plays a huge part as with diet you can definitely have an effect on the inflammation. Although not sure that diet is root cause. At the moment I am back on minocin and am herxing quite badly but working together with diet to help control/ease the inflammation. As people have mentioned on here before I think I now get the need for detoxing methods to help clear out the body. Also trying to calm the immune system through positive thinking and meditation etc i think are so important too. No doubt drugs help relieve the symptoms of disease but actual healing requires quite a bit more work. Rosey, there are many books/literature on anti-inflammatory diets to research that you could implement whilst trying to reduce prednisolone. I’m not sure if you have seen Vals Mums posts on here but she seems to be doing well using this method.

I just researched last night about Lyme Arthritis and The Marshall Protocal so I am glad to be back on Minocycline at the moment.
Are you back on Minocin at the moment?

[Rosey UK]

Hi Ablegirl,
No not on mynocycline yet. Where are you if your sisters in Wareham and you get to see sometimes?
I think I’ve read most of the books available, so much so I’ve actually bought the same books on a few occasions.
Keep our fingers X for a cure or remission will do me lol
Rosemary xx

[ablegirl]

hi Rosemary,

I am in Surrey so about an hour and a half drive to Dorset. Have you had RA long? How are you doing in terms of mobility and function. I’m not great. I know I chastised you a bit about steroids but do not listen as I am quite tempted myself to take some!!! ha, ha. I Ihave a box in cupboard) just to get a period of relief. I haven’t been normal !1! ha. ha for about 5 years now. it certainly does a job on your mental wellbeing as much as your physical. Lets hope they come up with something ssoon although they definitely keep going after symptom relief rather than cure. All research seems to be at ways of manipulating the inflammatory process in some way not actually looking for the cause of the process. I was diagnosed in 1997 and kept symptom free until a period of stress and a course of steroids the the course of my disease changed for ever. That is why personallyI am so anti steroids. Anyway nice to talk to you Rosemary, lots of love and improved health.

[Rosey UK]

Hi Ablegirl.
Yes it’s not a nice illness. You get to a point where you believe the only thing you can do is get as much relieve as you can.
I’ve tried elimination diets, I don’t eat nightshades, red meats except occasional organic lamb, tomatoes, peppers, etc, or citrus fruits. Cut out acidic and citrus. Still in pain and stiffness but at least I’m not making it worse.
I was diagnosed when I was 55, I was so bad my husband had to retire he was 60, but I’d been so poorly for about 6/7 years befor that. I’m 66 now.
I use a wheel chair and scooter for shopping. My hands are deformed, as was my feet but had 3 operations on them to correct them but doesn’t take away the pain. That’s the first thing I started with painful feel when I was in my mid forties.
I also have mixed connective tissue disorder.
Any way that’s me.
As for the steroids. There was no one more frightened than me to take them or any other of the meds available.
Keep well!
Rosemary xxxx

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