Little update

[lmartin]

I was wondering about that, even being on AP, do you experience some minor setbacks here and there?  Just yesterday my daughter put on her shorts to hit the treadmill and she was walking funny.  I asked her about it and she said that her leg joints (I guess it's the hip joints) were stiff.  That's the first time she ever mentioned that.  When I tried questioning her further about it, she just said she's fine, no big deal.  And then she ran on the treadmill, so I suppose maybe it's really not a big deal.  But I guess that's normal, that some days you feel more pain than others?  And more stiffness?

As for the skin flare up, unfortunately I have no idea.  But the theory sounds good!

Linda

[linda]

Hi MJ,

It's so tough to get off of prednisone. It's bad enough when someone has RA and they get a rebound flare, but when someone has PsA and they get joint and psoriasis flares it just doubles the problem. I know that psoriasis doesn't hurt unless it's severe, but unless you've had it you can't understand how hard it is to handle emotionally. It's not called the heartbreak of psoriasis for nothing. And to have it go away completely only to return, esp when you know that the drug that makes it go away is no longer an option, well it just stinks. I've been there, and I certainly empathize.

How much pred was your hubby on, and how quickly did he taper down? There is a 2% cortisone cream that is a Rx, I know, it's a steroid, but topicals don't enter our system the same way as pills. Maybe that could be used temporarily, once the skin is under control slowly use less and less of the cream.

I thought about suggesting DMSO as well. I don't think we've discussed it recently here. It's a liquid by product of the process of making wood pulp, and can give you a strong odor if used in large amts. It is absorbed very quickly, attaches to free radicals and leaves very quickly. It is used by some who are on IV antibiotics and also cancer patients on chemo, they get it thru an IV and that's when it causes problems with odor.; also vets use it on horses and dogs for sore legs and joints. In fact, you can probably find it cheaply at a local feed store or vet. office, I bought mine online for 7 dollars. I used it when my wrists swelled up; I would put cortisone cream on my wrist, followed by the DMSO so that the DMSO would carry the cortisone into the joint. It worked fairly well. I never used it for psoriasis so I don't know how it would work for it. I didn't get the odor, but I wasn't using much or getting it thru an IV. Also, you can get it with aloe to help with the smell. Make sure it's diluted by 10% or it will burn a little.

In the past I've tried everything, emu oil, diets, salt (which just hurt like @*@*! ), sunlight, shampoo w/coal tar, but never the infra red lamps. Stress would make it worse, sunlight would make it better, and would be good b/c he would also be getting Vit D as well. Just about 20 min/day is enough. What is he using as an anti-inflammatory to replace the pred? He'll need something or the antibiotics won't be effective. Good luck, I hope you find something that works soon,

linda

[Maz]

[user=1670]mj47[/user] wrote:

He wanted me to tell everyone here that he thinks that being on the prednisone for several months (instead of the 3-4 weeks that his rheumy wanted) is what caused this major skin flare.  He wanted me to warn others who have PsA to be aware that staying on pred for too long can cause serious psoriasis problems once discontinued.

We're hoping things calm down so that he can begin enjoying the arthritis relief that he's having.  What do you guys think about this theory:  that the pred was suppressing his immune system while the mino was at work.  Once the pred is out of his system, his immune system is really getting to work trying to deal with the die off from the mino & it's presenting in a really bad skin flare.  Just a thought.  If that's the case (i guess even if it's not) I think some detoxing & immune enhancement are in order.

Hi MJ,

Please tell your hubby that it is so kind of him to think of others while he's in the midst of all this and to pass on that message to everyone here. 🙂 What he has said makes very good sense.

Your theory that pred was immuno-suppressive while mino was at work and kicking in more effectively when off pred makes good sense. The interesting thing about the tetracyclines is that they don't do any pathogen killing, because they are “bacteriostatic,” and do not have the same actions as “bacteriocidal” antibiotics that destroy pathogen cell walls and kill them outright. Rather, the tetracyclines enter the pathogen and disable it by blocking certain enzymatic processes and the immune system that goes in for the kill. Therefore, while on any kind of immunosuppressive therapy, it makes sense that tetracyclines are likely working more as a DMARD than as an antibacterial. Your hubby's immune system was still reaping benefit from the disease modifying properties of the minocycline, but likely less of the antibacterial properties, if that makes sense? Without a fully functioning immune system, it is less able to kill pathogens.

Once the pred is reduced and eventually stopped, this is when the die-off really gets going and likely one of the reasons why people feel so rotten as they come off pred. The immune system starts kicking back in and is going after the pathogens that are being disabled by the tetracyclines. A good thing, but also rough when going through it.

Really great news, MJ, that your husband has made it through getting off the pred. It will take a while for everything to stabilize and it will likely be 3 steps fwd and 2 steps back all the way, but now he's going to be better able to discern actual improvements in his progress and to watch those windows of feeling better widen as time goes on. 🙂 YAY!

Peace, Maz

 

Peace, Maz

[mj47]

[user=1776]lmartin[/user] wrote:

I guess that's normal, that some days you feel more pain than others?  And more stiffness?

Linda,
I can only tell you my husband's experience w/ PsA…and that is that, yes, definitely, some days he feels more pain than others.  Right now he seems to be going through a bit of a see-saw action.  I try to ask him every night how he's feeling, what's bothering him, so that I can jot it down before I go to bed.  Four months ago he had several joints that hurt from his jaw down to his toes & he ached all over.   After being on the mino for a few weeks, slowly (now mind you he was on prednisone too & that helped tremendously, but obviously at a cost as he's now dealing w/ a bad flare of psoriasis – going to a dermatologist on friday btw) slowly he noticed that certain joints felt a little better, then they'd get worse, then better until one day we'd just stop discussing those joints altogether because they just didn't bother him anymore.  Now we're going through that with his ankles & back it seems like.  These are like the final frontiers of the accute pain.  Hopefully one day we'll just stop talking about them.  🙂
Also, here in Illinois, the weather is just awful & my husband totally reacts to dropping temperatures, dropping pressures and high humidity.  that combo is like a one, two sucker punch to him.  he'll ache all over.  But, I have noticed that this snow storm we're having right now hasn't affected him as badly as the ones we had a month ago. 
To make a long story short, yes…from our experience that's definitely what happens on AP.
MJ

[linda]

I was in Mo during the holidays and the weather was brutal! I got to come back home to SA, tho; I won't tell you out temp today cuz it will only make you sad. It sounds like things are slowly improving for your husband, but it does take time. Let us know how the dermatologist appt goes.

[mschmidt]

mj47,

I get teased by my husband that I'm the human barometer.  I can tell you if the humidity is high, the barometric pressure is changing, and if it's a full moon (or nearning one) without even looking at a forecast, or the sky.  I can literally feel it in my bones…especially my hands, which tend to swell up with the weather.  I read somewhere that bacteria and parasites follow the lunar cycle (like primitive creatures did), and respond to changes, especially when there's a full moon.  I know it sounds crazy but, there's a lot of info out there about it.:shock:  My guess is that I'm infested with parasites then…

Maria

[Kim]

mj47,

Has your husband been tested for Lyme (Igenex Labs only) because Lyme pain is very migratory, much like what you've described?

Take care…..kim

[mj47]

Maz,
That is so interesting…bacteriostatic.  I don't think I knew that about tetracyclines.  I think his immune system is doing spring cleaning right now!  😉
I hope he is able to stablize something soon.  I mean, his pain level is somewhat decreased & he's really upset that as he finds some relief in his arthritis, and therefore some hope that things can turn around for him, he experiences the worst psoriasis flare he's ever had. 
Will keep y'all posted on the next exciting chapter!
~mj

[mj47]

Hey Kim,
No, he's never been tested.  I know it's something that he should have done.  His pain, however, is not really all that migratory.  He had a huge flare that hit several joints at once & those pains have come and gone as he's been on the mino.  He hasn't experienced much new pain in new locations since the first one-two weeks on mino (which we chalked up to herxing).
But, I'd like him to get tested for lyme…somehow I have to get him used to the idea of going in for more tests.  Won't be easy.  He's been in & out of doctor's offices since he was 4 years old (that's when his migraines started) & not too keen on having to see someone to find out there's yet Another thing to contend with.  But, if I practice the ways of the river, I can use gentle persuasion to break down his barriers & get him the igenex testing.  😉

Thanks Kim!
~mj

[Eva Holloway]

Maria,

I have done just the opposite from you and Judy, I have lost 60 lbs and now staying steady for the last six months. I also had the severe muscle wasting problem. I have Dermatomyositis which has the same problem I guess then SD.I have started to eat more often, small portions, since I lost so much weight,  Trying to stay gluten-free is hard for me, but I am working on it,

Now since I have been on the antibiotics my thyroid also crashed and I have to take Synthroid since I can't get the Thyroid Armour anymore.:headbang:

I needed to loose the weight anyway because using Prednison it made me so hungry and I ate everything in sight,not a pretty picture and I had gained about 70 lbs. I weight over 200 lbs. 18 months ago then I started to loose weight real fast and it finally stopped after I started to use NAC and Ester-C.

Eva:D

Eva Holloway

[carries]

Hi [user=1670]mj47[/user]!

How much of the prednisone was he on? How long? And how quickly did he ween?

 

That happened to me last year, once i stopped the prednisone i had experienced psoarisis for the first time ever….it was so scarey….I didnt know what these ugly spots were all over my legs and arms. It was so embarrassing and thank god it was winter. It looked as if i had the chicken pox….and amongst all the other issues i was dealing with this just added to it and brought my self esteem horribly down. But thank goodness to light therapy……it took them all away….every spot. My dermatologist did tell me it would take about 23 visits….but boy was it worth it…..all the spots disappeared. And i was not on the prednisone at the time….nor did i go back on it for that.  

Now, in july i did go back on 5mg of prednisone and now i am currently weening off….slowly….very slowly….I am at 4mg…and probably could go down to 3mg…but dr wants me to wait a few more weeks…..But I fear the samething…..especially since it is winter ….I fear that once i am off the prednisone that those horrible spots will appear…..and i am in a wedding come April….ughhhhhhhhh! But thank goodness to light therapy….because at least i know i can resort back to that if need be…….but i am hoping and praying that it will not happen!!!

I am curious to know what dosage your hubby was on …let me know! Take care!

[mj47]

Hi Carries!

Let's see…he started on 10mg/day on 10/13/09.  His rheumatologist had him on it for a couple of weeks & then wanted him to taper off of it by going down 2.5mg per week.  On 10/28/09 he went to 7.5mg.  Then on 11/4/09 he went down to 5mg.  Then he had a pretty bad flare in his arthritis.  Since he started his minocycline only one week after starting the pred, he wanted to wean down from the pred slowly…one, to help the mino work by keeping inflammation down & two, so that he wouldn't have a flare of his psoriasis.  So, he stayed at 5mg until around 12/10/09 and then he went to just over 2.5mg.  Now, he had the 10mg pills, so he was just cutting them in half, then in quarters.  I told him to get a smaller dosage so it would be easier to wean down, but he opted to keep the 10mg pills.  So, his weaning wasn't exact.  I think he kind of judged how he was feeling & used that to figure out what size slice of the pill he would take.  But, after the end of December last year, he never went over 2.5mg.  During the first 2 weeks in January he got to a point where he was just taking a sliver of the pill. Until the 18th when he took it every other day for a few days & then just stopped.
I know that according to most here, the method he used may seem too quick, but he wanted to get off of it because he thought it was causing stomach issues.  Fortunately, his pain has definitely NOT increased (thank goodness), but he's really not enjoying the psoriasis on the face thing that's happening now.  Plus it's super itchy.
We were just talking about light therapy yesterday….so, it worked for you it seems.  Did you have to do all 23 treatments?  Do you mind me asking if it was expensive?  Did you just sit in front of a light, or did you also use psoralen (I think that's what it's called)…it's some adjunct to the light that's supposed to activate the light more in your system?  Any info you have to share on the light therapy would be greatly appreciated!  I'm thinking about sticking him on a plane & sending him to Arizona so he can sit in the sun!!  😀  He's got an appt with a dermatologist (family friend) who is going to give him a topical corticosteroid cream.  At least he'll have some relief, but we're really interested in the light.  I'm so stoked for you that your psoriasis went totally away!!  Plus, it gives us hope.
I don't know if how my husband weaned himself down will help you at all.  He went about it his own way.  He wanted to go slow to avoid what is now happening…but he's upset that he didn't do what his rheumy wanted him to do (get off of it within 6 weeks) because he wonders if that would've prevented this from happening.  But, then again there's the possibility that not being on it would've made it hard for the mino to get to where it needed to because he was in such an inflamed flare when he started both the pred & the mino.

Again, would love to hear about your light therapy experience.
Best to you!
~mj

[carries]

Hi MJ47! I did do all 23 therapies. IT was simple but kind of a pain in the you know what!!!! Not because it was hard…..but I would have to go 2-3 days a week. What you do is stand in this tanning booth (not like the ones in salons) and you would stand in there for about 2-5 minutes….they build you up in minutes slowly. So each time i went the time would increase. I did not have to rub anything on me….some patients did….not sure for what or what it was but your dermy will decide  that. She also told me that i wouldnt see improvements for the first half of the visits…which was true…but she did tell me by my 23rd visit it would be gone…and that was completely true. The cortisone creme never did anything for me. But then again….i didnt itch! There were so many of them there to put it on every single spot so i just didnt use it.

The light therapy was covered under my insurance so i didnt have to pay a thing. Have your dermy write a script…they  can look into what your insurance covers…but under most insurances it is covered. Thank God to light therapy. I didnt have to take any meds or cremes…the light therapy worked beautifully…….and it was painless. The only downside is the inconvienance of haivng togo 2-3 times a week…thank goodness it was only 4minutes from my home! Feel free to email me with anymore questions.

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