Tetracyklin – Mctd

[Tintap]

Zoofie
    I am glad to know that you are NOT having a bad day today. Its a long slow journey to recovery – so some days will be good and some days will be bad – but try not to get too much depressed. Sometimes I feel depression is also part of the disease – the days you feel really swollen  painful are the days when you tend to lose faith – but these days will lessen in number and gradually go away altogether and you will go back to  being the person you were before this disease took over you.

Once your AP starts working and you start feeling better then start SLOWLY reducing your prednisone. It has to be done SLOWLY or else you will be in way too much pain. it might take you 6 months to get rid of the prednisone. But once you do you will be free 🙂 . I know it seems to you right now that you cant do without the pred but once AP starts working you will. Once the AP has worked for you give it a year before you start trying for a baby – give your body the time to heal. Once you get back your strength and then get pregnant you may not need to go back on the prednisone while pregnant ( thats because pregnancy hormones tend to take away most of the pain and many women seem to go into remission or semi remission during this time).

You still are very young – so give your body the time to heal – running behind an active baby is no joke.

Cheers

Tintap

[zoofie_85]

Thank you- again;)

Okej, yes I have understand that it will take time..

But one question, you all say: its going to get better.

Then i wonder, do ALL gets in remission of ap I mean, does everyone who try ap gets good? or is it just for some?:shock:

I have a history that maybe can be a good thing, when i have got flue and sickness like that and have been on pencillin /antibiotica I

[eann]

Zoofie,

I think you have to go a LOT slower on reducing prednisone. 2.5 mg. is much too big of a reduction. Your body told you that yesterday.

Do you have a doctor that can help you manage the antibiotics, prednisone and your goal of having a baby?

I wish you well.

Ann

[zoofie_85]

Oh! can I reduce less than 2,5? maybe thay have pills who is 2,5 mg and I can cut they in 2, i will call and ask tomorrow! 🙂

Starting to get a little bit rigit now again.. but not that bad.

Noo,, my doc just say ” tell me when u get preg then u have to stop terta” I think he wants me to high the pred then..

[zoofie_85]

I ask again:

 

Do ALL gets in remission of ap I mean, does everyone who try ap gets good? or is it just for some?:shock:

[lynnie_sydney]

Zoofie, please understand that we here are all fellow patients. People who post here are generally still on their road to better health, so most are obviously still working on it. The “problem” is that, as people get better and get their life back, they dont really need to post here any more, they are too busy going back out and living their lives. As they should. We try and get as many of those people as possible to write their story. However, some do not want to look back and revisit their dark days – and that is understandable.

You might like to read some of the testimonials on our main site. https://www.roadback.org/index.cfm/fuseaction/community.sub/subgroup_id/6.html There are also more at http://www.rheumatic.org:   http://www.rheumatic.org/medhist.htm

It might also be useful for you to read some more (language difficulties notwithstanding) about AP to start to learn more about it on our main site at http://www.roadback.organd the FAQ (Frequently Asked Questions) section at http://www.rheumatic.org are also very useful. Lynnie 

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)

[maz.aust]

Hi Zoofie,

Just wanted to say – you are no different from any of us, we were all in pain & of course wanted the AP to start working pretty much immediately, but it doesn't work like that – it can take a while.  I agree with taking the pred for as long as you need it, just try to get the inflammation down so the abx can do it's job.  Eventually you will be able to wean yourself off, just not yet.  From one patient to another I think it is really far to early to say whether it is working or not but remember if you were taking the traditional medications they take a while to start working as well, so you either wait for the abx to work or go off the abx & onto the other meds & wait for them to work.  Either way it's a waiting game.  

Just hang in there & give it some time.  Try not to be too impatient!

Maz – Aust

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[judy cash]

Zoofie,

I sent you a personal message.   Look at the top right side, to see 1 new message and click.

Judy

[Tintap]

Zoofie
    The very fact that you used to feel better whenever you took antibiotics ( for other reasons) before leads me to believe that you should see improvements with AP.
But you have to keep at it and it will take time. I dont think you should see concrete results before 3-6 months. Just make sure you check the progress of your disease once in a while. For some people they get worse before they get better.

Also reducing pred by 2.5 mg is too much. I live in India where you get pred only in 5mg tablets. I cut them into 1/4th using a pill cutter. Yoiur body might be able to take a 1mg or 1.25 mg reduction of prednisone. But maybe wait till the AP starts working a bit more. I am on 2.5 mg right now – and at this stage I plan to start reducing in .5 mg decrements.
Cheers
Tintap

[lynnie_sydney]

Good suggestions tintap. Also zoofie, if you type in 'weaning pred' into the search box right above, alot of past discussions will come up about this – including how those who have successfully stopped have done it. The common theme seems to be in very tiny amounts and very,very slowly. Lynnie

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)

[zoofie_85]

Thank you..

its the same again, im very bad could not dress myself, cant help beeing so depress so i just crye all the time and feeling this is hopless.:crying: And i dont know if I do it wrong, or if i should bite and wait for its to get better. I took 10 mg pred yesterday, (i was good yesterday even from the morning) and today sooo bad 

Every other day its soo bad

I have no doctor who support this

[zoofie_85]

Sorry if you think im complain, but im scared. Im scared because I feel so bad, and the other day im much better. Im scared it wont work.

 

Sorry.

[zoofie_85]

[user=30]lynnie_sydney[/user] wrote:

Good suggestions tintap. Also zoofie, if you type in 'weaning pred' into the search box right above, alot of past discussions will come up about this – including how those who have successfully stopped have done it. The common theme seems to be in very tiny amounts and very,very slowly. Lynnie

thank you

[Tintap]

Zoofie
Dont cry -it WILL get better. I have bad days too when I cannot wear my socks or wear my clothes. Hang in there – I dont have a doc supporting my AP either – so I know how helpless you feel. But it will get better…. Just hang in there

Tintap

[carries]

I agree it will get better….hang in there! I would stay at 10mg for a while…did you take it yet today….the either day you felt better after it kicked in….give it sometime!

Do the lemon olive oil drink…it helps!!!

[Author]

Posts