Crossroads – where to now?

[hotspur2904]

I finally got to see Dr H, the only AP doctor in the UK yesterday afternoon.

He was very helpful and based on my ?acute? psoriatic arthritis has suggested that I go onto IV AP and reduce my current Mino from a daily 100mg dose to a 100mg MWF pulse dose.  

He was unable to tell me whether my pain was as a result of coming off the steroid injections or Leflunomide or whether it was a herx.

I have to say, I have never been in so much pain as I have been over the last few days and I have had to add prescribed Co-codamol painkillers (together with 3 x 50mg Diclofenac daily) to ease things.  I can?t squeeze a toothpaste tube, turn door handles or even uncork a wine bottle. Yesterday I had to go up the stairs on my backside and this morning it took

[spacehoppa]

Hi Simon,

So glad you got to see Dr H and that he will give you IV antibiotics. This will hopefully give you a faster start on the AP and may make a lot of difference.

As for the flaring, from my own personal experience, I would say it's the steroids. It's always the *&^%$

[lynnie_sydney]

Simon – so sorry to hear you are in so much pain. It could well be a combination of coming off the steroids and a herx. I am inclined to still think that alot could be due to the enormous starting dose. I have many memories of people on this Forum over the years I have been around who started gung-ho and ended up in excruciating pain  very much like you. You need to make these decisions in conjunction with medical advice, of course, but if it were me, I'd perhaps look at taking some form of steroid (lowest dose possible) to get you over this very bad patch and, perhaps, having a wash-out period from the abx before re-starting at a pulse dose. It sounds as if you are still daily dosing from your post and that is obviously king-hitting you. Too much too soon often proves a deal-breaker for many people who start AP. So, my personal opinion is that the sane way to go would be to do what you can to ease your current unmanageable levels of pain and inflammation, let everything settle and then re-start. And if 100mg MWF proves too much, you can go lower still. We've known hyper-sensitive people on a pulse dose of 25mg who still get results. Hope things improve soon. 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)

[jims]

Hello Simon, sorry to hear about your pain. In the last couple of years I have had alot of pain as well. One Dr. asked me when/where does it hurt, and I said everywhere but only when I move. I took the biologics for ten months. Have you thought about asking your doctor about prednisone up to 5mg.s. I have had good relief with this dosage and I am a decent size at 6'3″ and now only 240lbs. (Was as high as 312lbs!!) I take a 5mg. tab and use the pill splitter, taking half in the am and half in the pm. I tried to taper myself down and then went on high dose aspirin 1500 mg.s a day, I was once put on 6000 mg.s of aspirin for suspected rheumatic fever. I thought it might help again and gain me some time off prednisone altogether, I was wrong. I got so stiff and sore that it was really bad again. So I started back on the oral prednisone at ten mg.s a day, and slowly tapered back down to the recommended dose of 5 mg.s.That is where I have been for about two months now. Many here say low and slow, and I firmly believe it. It is taking time, but I know it is helping because at least now I can stand up and stand on my feet for a few minutes. There was a time when I could not. I have read some doctors putting patients on biologics only until the inflammation is under control and then back off, my experience is they want to keep you on it. I had several adverse events while on remicade- psorasis first time, MRSA then was switched to Humira-pneumonia, lung doctor took me off, and I have not started back.  Of course there are folks who get help for many years from biologics, and it is a very personal question between you and your dr. Mine had me sign a form not to sue him!!! 😀  Jim

[DianeTexas]

Simon,

I remember those days of not functioning, trying to start the car, the effort to put on a seatbelt then to actually drive.  The wine bottle thing is very frustrating!  I am starting year 5 of AP.  I am glad to see your dr. going the IV route.  I did those in my 2nd year and it really kick started me getting better.  Also, my dr put me on lose dose prednisone 5mg which was a great help.  Just be aware of not being on it too long and realizing that it takes a while to get of it.

Just have hope that it will get better! 

Diane

[judy cash]

Simon,

I really don't have any advice for you . But, I do have sympathy for your situation. Also, I just wanted to say,that it's o.k. not to ask a question, sometimes, you just need to “vent” to others who understand and care about you. We are all using this site for helping others. Please know that I will remember you in my prayers, and hope the best for your progress. I believe you will get improvment, it just may take some time and re adjustment of your meds, and AP. Don't be afraid to use something for pain, if you have to, because if it gets so unbearable for you , You may want to give up on AP , Please don't give up on it , Just give it more time…..O.K. thats All, no more lectures from me…………. This is just my encourgment.

judy

[Maz]

[user=1526]hotspur2904[/user] wrote:

I?m due to see my rheumatologist in 2 weeks who wants to put me on Humira which I really don?t want to do.  However the way I feel right now I would take a shot in the stomach straight away.

I really want to stick with the AP and give the IV a go but I?m afraid that if things continue as they are I may concede just to put me out of my misery!  

Simon, I'm glad you posted, because the fears you're expressing are something we all go through – the uncertainty of wondering if we can make it through the early months and even sometimes down the track when we hit a speed bump.

What kept me going in my first year was reading and re-reading The New Arthritis Breakthrough and hanging out here with all the RBF friends. Seriously, my doc actually had me sign a “herxheimer agreement.” It was an informational sheet explaining how one worsens when starting antibiotic therapy….he wanted me to be absolutely aware of the choice I was making. He even predicted how long my herx was likely to be, told me I'd herx every time we adusted my meds and possibly for other reasons (like bugs being more susceptible at different times of their life cycles), and that due to my severity it could take 3 to 5 years to hit remission. It was a huge decision – daunting – but having read all the literature about my rheumatic condition and the usual “idiopathic disease, no cure, chronic progression, drug side-effects,” stuff, I figured it was worth a shot and, besides, I became increasingly more convinced of infectious causes as time passed and I started to improve in small increments.

As Jims said, though, all the treatment choices we make have to be very personal, well-informed decisions made between you and your doc. Why don't you see your rheumy and get the Humira? Even if you keep it to one side and store it, at least you know it's there if things get really bad. Also, I agree with Lynnie….ask for some prednisone to keep by, as well, but being careful to limit yourself to very small doses if your pain meds aren't enough. I was fortunate, – my kids were old enough to take care of themselves and I was working from home. Other folk don't have these luxuries, or may live alone or have to look after an elderly relative, for instance. So, it's a needs-must situation in the beginning and this will be different for everyone – there is no failing if we need help along the way. Point being, you don't have to give up AP if you find you need some help in the beginning from other means. Dr Brown did use small doses of prednisone, as needed, so I think I'd personally start this way before hitting the big guns, but it's very much an individual choice, weighing out the risk/benefts for one's self.

To hopefully offer some reassurance, though, the fact that you're reacting so strongly after starting AP is a good sign the abx are reaching the target. Dr H's idea to lower the dose is definitely wise. It's much harder to dial backwards on AP than to work up and you're going through exactly what I experienced, too, in the beginning when I started way too high. This treatment is absolutely counter-intuitive to treating a chronic infection and less is more. Some people can tolerate daily dosing, but others just can't and it's very individual, so this is why working up slowly when starting to see what is a good fit is so important. A washout for a week or so also sounds like a very good idea, if Dr. H is agreeable to this…just to offload some of those circulating toxins and flush yourself out a bit.

I know I'm probably repeating everything said above, but sometimes it helps to hear perspectives from a few different folk – everyone's viewpoint is different, because personal experience of AP is going to be unique. Hang in there, Simon….David C was in exactly your spot last spring…he just posted how much better he's doing now he got through those challenging, uncertain early months.

You're in our thoughts and post anything you want…even to have a good ol' whinge. We all do at times and no one thinks any less of anyone…we all understand, because it's just mirroring our own experience and validates for all other new APers what they are going through, too. You might actually be helping others more than you know. 😉

Peace, Maz

 

[whaleharbor]

I think all of us have felt as you do right now…wondering if you are making the right choices, wondering if you can make it through the day, wondering what the future will hold and terrified to think of it all and yet dependent on yourself ultimately (with your docs help) to make such important choices. 

Sometimes I think “the road back” should be called “the road less travelled”

___________

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveller, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I–
I took the one less traveled by,
And that has made all the difference

______________________

– – my prayers are with you that God will light the way for your and your doctor to make the right most perfect choices for you and to give you strength to get through this and onto brighter and easier days.

— whaleharbor

 

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[hotspur2904]

Thanks everyone for your kind words.  It is a real help and has encouraged me to stick to the AP and only go down the Humira route as a last resort.

I'm off the Sebomin for a few days and going onto a pulse dose from Monday.

I feel a lot better today and tomorrow's another day!

Have a great weekend everyone

S 🙂

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