Confused and uptight

[Rockin Annie]

Hi all you experience Apers………..

My mind is in a spin after my first consultation with my Ap Dr K in Melbourne, its not quite the same as face to face.

He suggested that I stay at 150mg of minomycin MWF because of my 50 kilo weight and have a course of Dalacin C Iv's as I have had Bronchiectasis for many years and have an history of chest infections. He also said to go off Methotrexate and Sulfasalazine cold turkey, but stay on Prednisone and Celebrex. He also wants me to have some tests done to identify the bacteria. Hopefully my RD or GP will administer the Iv's and order the tests, when I get the package from Dr K.

I rang my RD after speaking with Dr K, to see if he would help me, but he was very reluctant and said he would look at the notes first.

My question is……..I goggled Dalacin C, but the sites are so confusing and over my head…..is Dalacin C the same as Clindamycin and is it used for respiratory bacteria. I am worried about going off Mtx and Sulfasalazine as the pain on the onset of my RA is only too raw, even after 4 years, I don't know if its mind over matter but I can feel little twinges started already, owww!.

I guess I just need some advice and support to get my confidence back, any help would be great……….

Thanks Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[Cheryl F]

Some people have successfully gone of the Metho cold turkey, but I would say, if that is not what you feel comfortable doing, then tell Dr. K that you want to taper off and if that works OK, but if you start to taper too fast and feel it, then you may need to bump back up.  You don't have to go back into pain to do AP, do what works for you, with your doctror's support and consultation of course.

Cheryl

[Rockin Annie]

Cheryl…..

Thanks for your reply, I have given it a lot of thought, and will taper like you suggested………can't believe how much my mind was in overdrive trying to come to a decision….

I will do also do a bit more research on Dalacin C, as I can't rest until that is clear in my mind.

Annie 

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[casey]

Annie,

Clindamycin in Canada is labeled under Dalacin.

Casey

[Parisa]

Hi Annie,

What is an RD?  My first google attempt brought up a Recipe Doctor but I have a feeling your RD is something else. 

I think it's great that Dr. K wants to try and go after the organism that is causing the Bronchiectasis.  Hopefully the clindamycin will target it. 

I agree that it might be better if you don't turn everything upside down by going cold turkey off the sulfasalazine and MTX.  Once you do get off the MTX and sulfasalazine however hopefully your lungs will improve even more. 

It's hard when you switch up your treatment but try think of it as a good change something that is going to get you even better.  We recently switched out a couple of the IV antibiotics my husband was doing to a different combination and I had a “slight” anxiety attack about it.  I finally gave myself a shake and told myself that change didn't have to be bad and so far it seems to be working just as well and hopefully will lead to further recovery down the road.

[JBJBJB]

Annie,

I also went through the same feeling as you are dealing with. I was doing really well with the combination of 400 mg plaquenil and minocycline. But I decided to slowly wean the plaquenil off. After the plaquenil was completely out of my system (it took about 3 weeks after completely stopped plaquenil) I started to have a big time HERXING. It brought me back to my squre one situation. I could hardly move my arms and I was in a lot of pain. It took about 2 to 3 weeks to get over with it.

I am still in a lot of pain but I do have good days and a few bad days. I still have a hard time to change my clothes, close my car door. But I am not taking any pain killer unless I absolutely have to. My ESR jumped up from 19 to 40 and now it comes down to 25. I am doing a little better each day.

I use ginger, hot pepper and other remedy to combat the pain. It has been working.

JB

 

[A Friend]

[user=807]Rockin Annie[/user] wrote:

…..He suggested that I stay at 150mg of minomycin MWF because of my 50 kilo weight and have a course of Dalacin C Iv's as I have had Bronchiectasis for many years and have an history of chest infections. He also said to go off Methotrexate and Sulfasalazine cold turkey, but stay on Prednisone and Celebrex. He also wants me to have some tests done to identify the bacteria. Hopefully my RD or GP will administer the Iv's and order the tests, when I get the package from Dr K……

….I am worried about going off Mtx and Sulfasalazine as the pain on the onset of my RA is only too raw, even after 4 years, I don't know if its mind over matter but I can feel little twinges started already, owww!…..

Annie,

What I'm about to write is not advice.  It's “brainstorming” just a bit. 

I'm wondering if your doctor isn't concerned that the Methotrexate will be slowing down your immune system too much and allowing the infectious organism causing the bronchiectasis to grow. 

I do encourage you not to make a decision to stay on Mtx unless you tell your physician about it. 

Best of luck whatever you do,

AF 

 

[Rockin Annie]

Hi Casey, Parisa, JB, and AF………I thought you guys had forgotten me.

Thank you so much for your replies, I have been awake nearly all night, going over what Doctor K said. I nearly broke my neck getting to the computer this morning to see if I had any replies.

It was so clear to me when I just had to take the Minomycin, but when he suggested going off the meds and doing the Iv's , plus having to ask my own Rheumy to administer the Iv's, I was in a tail spin, I don't know why I am so nervous when it comes to my regular Rheumy.

Casey…….I did read that somewhere, but I just needed reassurance, as I haven't heard Dalacin C mentioned anywhere on this board, I guess I just want to be on what everyone is on.

Parisa……That comment gave me a giggle, you could call my RD (Rheumatoligist Doctor a recipe doctor, I was  trying to be cool and shorten my words, when I was on another board, a lot of the users used letters instead of full words and it took me ages to figure out what they were saying.

Your comment about my lungs improving when going off  Methotrexate and Sulfasalizine, made me think back to before I started them, and yes I have to work harder to keep my lungs clear, I never gave it a thought it might have been the meds.

I always loved changes in the past, but when it concerns your health its very scarey. I hope your hubby does keep on improving with the changes and wish him well.

JB…………..That is what was worrying me, I still remember not been able to move my arms and hubby having to help me get out of the car,  I am sorry you are still having pain but it must be a great feeling knowing you are getting better without conventional meds.

AF……..Thats exactly what Dr K said while taking Mxt and Sulfasalazine with Minomycin, it can cause more toxins in your body, which in turn  more problems, so you are spot on (very clever brainstorming) I should have taped all what he said, I forgot about that as well.  I just received my results back back from having my bloods done and it looks like the Abx is doing its work, my WBC are elevated, so I think I will stay off Mtx (I already have missed a week anyway).

I just want to thank you guys again, very much, it is so good to have you on board for us newbies with your support and advice, my head was so screwed up trying to decide which way to go…………….have a great week – end, I know I will now………………:blush:Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[Parisa]

Well I have to tell you that I like Recipe Doctor much much more.  I really don't like most rheumies as all they have to offer are scary immune suppressing drugs.  I vote we dump the rheumies and just have Recipe Doctors!

[Baskettwin]

Hi Annie, continued prayers for you. I am no help since I am a newbie here. For some reason I can't get the white count thread to open. Anyone else having problems? I even shut down the computer and no luck.

Sending hugs and well wishes too.

[A Friend]

Baskettwin,

If all else fails in opening the white count thread, try typing in “white count” in the white search window at the top of the page and then click the Search button.  This should access all posts with these words in them.

AF

[Jo]

[Rockin Annie]

Thanks guys…………….well wishes and hugs to you all………….Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[JBJBJB]

[user=807]Rockin Annie[/user] wrote:

JB…………..That is what was worrying me, I still remember not been able to move my arms and hubby having to help me get out of the car,  I am sorry you are still having pain but it must be a great feeling knowing you are getting better without conventional meds.

Annie,

You will have to wait until you are doing really really well with other medicine and minocin, then, you could gradually withdraw one of your med and then another. Always check with your doctor before you do anything.

After talking to several RBF members, I knew what kind of risk I was taking, so I was prepared. My biggest concern is my lungs. I am really glad after 6 months, my lungs have not got worse. So that's very encouraging.
 

I really weighted how toxic plaquenil could be in my system if I'd take it for a long term. Other thing I don't know is drug interaction effects which could also cause toxins in my body. The less med I have to take, the better. So I decided to get rid of plaquenil as soon as I got a chance. I don't want to look back even though I did really amazingly well on plaquenil.

One suggestion is to have all your blood work done before you start to wean off your med and after a while, when you'll feel worst, test yourself again, then when you'll feel better, test again. This will give you a sense of how much you can improve with only minocin.

It's a hard decision. Hope you will make a wise one.

JB

 

[Rockin Annie]

JB………… It is a very hard decision, but I have weighed everything up along with the advice from all my friends, and decided to wean off Mtx (taking half my dose weekly)  stay on Sulfasalazine as it is an antimicrtobial and shouldn't  interfere with Minomycin. Let the Abx build up in my body and check my bloods monthly to see how things are going, like you said.

At least staying on Mtx will keep me from herxing badly ( wondered why I wasn't having a hard time with them, like some newbies on this board). I know its sounds silly but I wasn't looking forward to the festive season, as that would be about the same time as the lack of Mtx would start to have on my body.

I have had lung problems for as long as I can remember, and have lots of scar tissue from bouts of pneumonia, I look forward to having the Dalacin C to see if my lungs improve. Do you mind telling me what problems you have with your lungs.

well wishes to you…….Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

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