Really need reassurance.

[rurumelb]

Hi,

I’ve been on a bit of a roller coaster with my treatment. I successfully went into remission on AP a couple of years ago but then became pregnant and symptoms returned in full force after I delivered. I restarted the Minocycline however was back in my home country by that time, and was so sure that I made sure I was taking the brand Minocycline and not the generic. A year and a half later I woke up to my stupidity and realized that I was actually taking the generic here in Aus.

I am now taking the correct brand in Australia but I feel absolutely awful despite the fact that my blood test results appear to be getting better and better? After I had my son in April 2013, my CRP was 110 and I was rheumatoid positive. My ESR was also extremely high I can’t remember the number but that has also dramatically improved. Then in February 2014 my CRP was 68 and now in September 2014 by CRP is 40. My ESR is 30 but it was much higher before, (sorry I’m so sore to get up and go check.) And now I am Rheumatoid negative.

So I guess in this year and a half being on the wrong brand of Minocycline my CRP has gone from 110 to 40 but should be below 3. Will I ever get to remission again? I feel in more pain now then I did last February. I had some Xrays on my hips done and my Rheumatologist yesterday told me that the damage is bad and I may need a hip replacement in the future. I’m going to buy glucosamine tonight and see if that will help me… It hurts so much to walk. I have booked to have a cortisone shot in my right hip, I would love to have both done though, does anyone know if the cortisone will reach both hips? I really need to function, I’ve got 2 small boys and live in a house with stairs. I guess what I’m asking is, going by my blood tests, am I slowly but surely on my way to remission? I’ve seen two Rheumatologists in the past week. I went to see a new one on Tuesday, he was such a nightmare, I have never encountered such a horrible experience in my life, he was so rude and quite frankly a disgusting person, he made me so uncomfortable I left his office crying. Then my husband managed to get an appointment for me to see my old rheumatologist in the same day so I saw him on Wednesday to get the referral for the cortisone shot and he was so aggressive, I just feel so upset like I can’t get any treatment or help from any of them. I am fortunate that I have a good general doctor but I’m so worried about my hips and that I’m going downhill, I don’t understand why rheumatologists are so rude with me, I’m so sensitive at the moment I just can’t handle it.

Edited to add: Also my rheumatologist has prescribed a higher dose of MTX 10 mg per week and added plaquenil. Is it safe for me to take this combination with 200 mg Minocycline per day? He didn’t seem to see an issue with it but he didn’t even ask me how much Minocycline I was taking when he said it was okay. :S

[lynnie_sydney]

It’s not unusual for RA to flare up after a major hormonal change – and having a child is certainly in that category. I’m not sure who you are seeing to prescribe your mino. If it is your general doctor, it might be an idea for him or for you to ask these questions of Dr S in Iowa – who kindly consults with patients or their doctors now that he is semi-retired (a long-term AP practitioner who originally received guidance from Dr Brown and there is a whole chapter on him in The New Arthritis Breakthrough book). enzed has recently done just that about her situation – and has posted his response to her today.

We can PM you his details if you like.

Hang in there!

p.s. a lot of us have had bad experiences with rheumatologists (rude or dismissive). Can be so very disheartening when we’re already in pain.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[rurumelb]

Thanks Lynnie,

I actually have Dr S’s e-mail. I will ask him about taking those medications, thanks for reminding me. My head is all over the place.

[Anonymous]

Rurumelb,
I have a similar experience with the rheumatologists here, I wouldn’t be surprised if we both have seen the same one.
My stomach couldn’t stand 200mg Mino with 12.5mg of Methotraxate.
Best wishes,
Linda L.

[Anonymous]

Hey there rurumelb,
I had a cortisone injection in my right hip yesterday, I understand that each hip must have its own injection, I was givena local injection just to numb the surface then an injection of a long acting local anaesthetic and cortisone were injected together, the Dr I had did it very quickly, the long acting local that was injected with the cortisone will wear off in a week, I already feel some relief from the hip pain and I too was reccomended to have a hip replacement.
At this point I am glad that I had the injection, it was uncomfortable and alittle painful for a very short time but not as painful as what I had been living with.
Good luck. Milo.

[rurumelb]

Hi Linda – sorry to read you had a similar experience. This Rheumy was in Heidelberg.. He made a request from me that I felt was so inappropriate and unnecessary, so I felt no choice but to leave. I hope I will be able to tolerate all these meds, still waiting to see what dr S from the USA responds about it.

Hi Milo – glad that you’ve got relief from the cortisone injection. Thanks for clarifying if it will help the other hip, I will ask my dr about a referral for the other hip next visit.

Thanks everyone

[zeljana]

Hi!
My 5 year old daughter had numerous injections of steroids so far..I lost counting.
I wrotte to another Dr. few days ago who also practice antibiotics and this is, among other, in her email..so now I am thinking if this steroids are one step forward, ten steps back..
qoute:

“Every injection of steroid whether systemic or in the joint will set you back a year or more. Steroids need to be avoided almost at all cost. I will give steroids for life-threatening allergic reactions or respiratory problems, that

[Woods1977]

For whatever it

[rurumelb]

Thank you Jeljana and Woods1977. I think I just have to be patient and persevere.

Jeljana are you really sure the cortisone injection will be detrimental to AP? If that is true, I will consider cancelling the appointment. I have never ever had a cortisone injection and don’t plan on having them continuously, but I had read here and there that Dr brown used cortisone injections to relieve inflammation so that the antibiotics could reach the joint? Can anyone please advise whether they think I should or shouldn’t have the injection? My hips have been severely inflamed for months while my other joints seem to be improving. Please let me know.

[zeljana]

@rurumelb wrote:

Thank you Jeljana and Woods1977. I think I just have to be patient and persevere.

Jeljana are you really sure the cortisone injection will be detrimental to AP? If that is true, I will consider cancelling the appointment. I have never ever had a cortisone injection and don’t plan on having them continuously, but I had read here and there that Dr brown used cortisone injections to relieve inflammation so that the antibiotics could reach the joint? Can anyone please advise whether they think I should or shouldn’t have the injection? My hips have been severely inflamed for months while my other joints seem to be improving. Please let me know.

rurumelb, my daughter is just a patient and I am her mother so I can not give you any medical advice. I have posted section of an email by one doctor and her opinion but on the other hand in “Arthritis breakthrough” Dr.Brown says that steroids in small doses can be administreted. Dr.S is also suggesting that she can take (orally) small doses of steroids while waiting for AP to start his work.
This earlyer qouted Dr also sad in her email – qoute:
“The

[rurumelb]

Thank you Jeljana, I will have to do some more research and then have a careful think about it.

[zeljana]

@rurumelb wrote:

Thank you Jeljana, I will have to do some more research and then have a careful think about it.

I also saw in your signature that you are on MTX. My daughter was on it for 7 months and there was no change. How are you doing on MTX? I belive that all this medications may affect AP. Unfortunately, in my country we do not have AP doctors so I must do reshearch on my own and looking for signs and monitoring my daughters progress/condition very carefully .
Thank God on RBF and and physicians from around the world who want to help me because I would be lost in this sea ??of ??information. Our pediatrition is also great and he is open to other options besides “golden” standard for arthritis treatment.
This Dr.K also wrotte in her email :
“Also, DMARS totally beat down the immune system. You want the immune system working, not beat down. Otherwise you can

[rurumelb]

Hi Jeljana,

I have only been taking 5 mg of Methotrexate for a couple of months, I am unsure if that is even doing anything, but this week my rheumy increased the dose to 10 mg and also added plaquenal which is sitting in my cupboard but I haven’t started yet. It’s so difficult to know what to do. Even though I feel awful, my labs are slowly improving, I hope I will reach remission eventually. I do wish that I started taking glucosamine earlier, to prevent some of this damage, I’ve been reading some good stuff about it. I hope your daughter makes a full recovery. How are her CRP and ESR at the moment? Is she too young to take Minocycline? I wonder if there are some herbs similar to minocycline that may be safer?

[zeljana]

@rurumelb wrote:

Hi Jeljana,

I have only been taking 5 mg of Methotrexate for a couple of months, I am unsure if that is even doing anything, but this week my rheumy increased the dose to 10 mg and also added plaquenal which is sitting in my cupboard but I haven’t started yet. It’s so difficult to know what to do. Even though I feel awful, my labs are slowly improving, I hope I will reach remission eventually. I do wish that I started taking glucosamine earlier, to prevent some of this damage, I’ve been reading some good stuff about it. I hope your daughter makes a full recovery. How are her CRP and ESR at the moment? Is she too young to take Minocycline? I wonder if there are some herbs similar to minocycline that may be safer?

This is very important- “I feel awful, my labs are slowly improving”.
Many patients on this forum had Herx and this is good sign. Therapy is slow

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