I really am fed up with this stupid disease

As5567

Its that time of year again when the weather is beginning to get nice and for the 2nd year in a row I'm a prisoner stuck indoors. Right now things are as bad as they can possibly get, I'm currently 4 weeks into my 6 week "washout" so I can begin a new medication, I know things are going to get worse before they get better simply because I'm taking no medication other than the pred which has been increased up to 25mg. Having to increase the pred was also a big kick in the teeth because I had been working hard to decrease this to 7mg, but apparently my doctor says it would be much safer for me to not taper down my dose during a washout period as the body will most likely be under more stress due to a flare in AS symptoms, so I had 2 choices, either go up to 10MG or go up to 25MG, I chose the 25MG just because I thought if I'm going to increase my dose I may as well go for the 25mg, gettiing down to 10mg pred is easy, the hard part is when you get below 10mg so either way I would be in the same sort of situation.

I really do hope my luck changes soon, I am really fed up of being stuck indoors now and even more fed up of having to wait around each day for the district nurse to come and pack and dress my wounds which are refusing to heal from an operation back in Oct. The new medication I'm about to begin does sound promising but so did Simponi so I'm not really expecting much of it just yet, the website for the medication claims people feel benefits within as little as 1-6 weeks so that is one bonus rather than the typical up to 6 month statement which other drugs I've taken seem to have

stickywicket

I don't know what to say except to offer sympathy. You have had a tough time for a long time and are now in a horrible limbo of waiting. The enforced pred increase and difficulty of getting your wounds to heal is just a further blow. I hope, when you are finally able to take it, the new med will work well and quickly.

dreamdaisy

There's no doubt about it, you are having a very tough time at the moment: is it the pred that is halting the healing? Far too often it seems that us auto-immuners are damned if we do and damned if we don't, our conditions are not anywhere near as straightforward as other illnesses and yes, it can be very frustrating.

The 'better' times seem to fly past whilst the tougher times linger. It is about time that something changed for you and I hope it comes around soon. DD

barbara12

you really have and are still going through it, but we are here to listen. and hopefully that will help a little bit..I do hope things improve very soon for you...(((()))) xx

LignumVitae

Oh poor you. I too have little to offer but sympathy. You do seem to have the toughest of arthritis rides with little in the way of breaks. I have to say though, you have a true grit and determination which must be essential to get by. To be in your situation and have half an eye on the future and dropping the pred dose down is quite remarkable and inspiring. I agree with DD, do you think the pred may be causing the healing to be slow? If it is any consellation, when Mr LV had a similar op the recovery and wound packing period was very long and he is on no drugs and his immune system behaves. Is it worth asking for a wound care specialist to review your treatment? I know there are all sorts of wound packings, some very expensive but worth the price. Mr LV had his changed a couple of times until he ended up with a seaweed based treatment, he had reacted to standard stuff. I also know from looking after an elderly relative with an unhealing ulcer it took much fight to get her the good stuff...fight I appreciate you probably don't have right now. Keep going, I really hope this treatment will be the one for you.

Ladybrown

So sorry to hear you are having such a hard time.
Fingers crossed the new meds are an improvement

theresak

You are having such a rotten time - I really hope that when you get the new drug it will work for you, preferably sooner rather than later.

Slosh

Just wanted to say I do hope the new drug works better for you, but it must be hard in the meantime. Fingers crossed things start to look up for you soon

As5567

Thank you all for you kind messages of support.

Well my medication has hopefully been ordered yesterday, they said 2 weeks ago it was done but apparently not which seems to be a common thing at my hospital, was the same with my last medication and when I began on the meth injections. I will call HaH tomorrow to see if they have received it yet or not. Hah have told me because I already have an active account the day that they email over the prescription they should be able to dispatch it within 48 hours rather than the usual 1-3 week wait for a new customer.

dreamdaisy wrote:

There's no doubt about it, you are having a very tough time at the moment: is it the pred that is halting the healing? Far too often it seems that us auto-immuners are damned if we do and damned if we don't, our conditions are not anywhere near as straightforward as other illnesses and yes, it can be very frustrating.

The 'better' times seem to fly past whilst the tougher times linger. It is about time that something changed for you and I hope it comes around soon. DD

I have so far seen 3 different surgeons and a wound healing specialist nurse, all 4 of them are convinced the combination of TNF drugs and the long term use of pred is the perfect recipe to discourage any sort of healing. Things did start to go in the right direction Christmas time but they come to a stop.

LignumVitae wrote:

Oh poor you. I too have little to offer but sympathy. You do seem to have the toughest of arthritis rides with little in the way of breaks. I have to say though, you have a true grit and determination which must be essential to get by. To be in your situation and have half an eye on the future and dropping the pred dose down is quite remarkable and inspiring. I agree with DD, do you think the pred may be causing the healing to be slow? If it is any consellation, when Mr LV had a similar op the recovery and wound packing period was very long and he is on no drugs and his immune system behaves. Is it worth asking for a wound care specialist to review your treatment? I know there are all sorts of wound packings, some very expensive but worth the price. Mr LV had his changed a couple of times until he ended up with a seaweed based treatment, he had reacted to standard stuff. I also know from looking after an elderly relative with an unhealing ulcer it took much fight to get her the good stuff...fight I appreciate you probably don't have right now. Keep going, I really hope this treatment will be the one for you.

The combination of steroids and TNF drugs are what's stopping the healing so I'm told. It is some comfort to hear that even healthy people can have problems healing, it seems to be just one of those things, some people are lucky and things go right and heal fast without issues, others get unlucky and are stuck with the discomfort for months on end. I did try a silver based dressing not so long ago which was suggested by a wound healing nurse but that actually had the opposite effect, caused a lot of bleeding and was killing off the new tissue that was forming. No doubt the steroids are to blame for that also as they are making my skin very thin with splits between my fingers etc.

LignumVitae

My recollection is a little hazy but I'm pretty sure the silver is an antibacterial agent rather than healing promoter and something with either seaweed or manuka honey in would be more appropriate for promoting healing. I think the silver tends to be quite aggressive, great if you have an infection, not so great if your skin is delicate and thin. Steroids are wonderful things in terms of controlling unwanted inflammation but the side effects are so unkind and difficult to control. I wasn't allowed a steroid shot last summer because I had an insect bite and there was consensus that the bite would become cellulitis the second the steroid became effective in my body.

My experience of wound care management was that you really needed to fight for all your worth. The dressings are prohibitively expensive and they will do all they can to not use them. I was lucky with my relative to have a nurse who wanted to fight for us and she was the one who helped us argue our way with the wound care people but it was a slog to get things moving (and necessary, we are talking a three year unhealed ulcer that was at risk with recurrent infection). They tend to try adn keep costs down and think along the lines that it is cheaper for AS to be slower to heal whereas you really are the kind of case where they shouldn't be taking that line and should instead be throwing their money at you because long term it is likely to be cheaper and far lower risk to get that wound on the way to healing as fast as they can given your steroid/ anti TNF therapy.

I hope you get the new meds ASAP. I found when I switched from enbrel to humira that Alcura did the switch much faster than the hospital expected because, like you, they already had me on record.

Starburst

I'm not surprised that you're fed up. You've had such a rough ride. It sounds like a delicate balance between enough medication to control the AS but not so much that it impedes healing.

We are here for you. ((( ))))

As5567

LignumVitae wrote:

My recollection is a little hazy but I'm pretty sure the silver is an antibacterial agent rather than healing promoter and something with either seaweed or manuka honey in would be more appropriate for promoting healing. I think the silver tends to be quite aggressive, great if you have an infection, not so great if your skin is delicate and thin. Steroids are wonderful things in terms of controlling unwanted inflammation but the side effects are so unkind and difficult to control. I wasn't allowed a steroid shot last summer because I had an insect bite and there was consensus that the bite would become cellulitis the second the steroid became effective in my body.

My experience of wound care management was that you really needed to fight for all your worth. The dressings are prohibitively expensive and they will do all they can to not use them. I was lucky with my relative to have a nurse who wanted to fight for us and she was the one who helped us argue our way with the wound care people but it was a slog to get things moving (and necessary, we are talking a three year unhealed ulcer that was at risk with recurrent infection). They tend to try adn keep costs down and think along the lines that it is cheaper for AS to be slower to heal whereas you really are the kind of case where they shouldn't be taking that line and should instead be throwing their money at you because long term it is likely to be cheaper and far lower risk to get that wound on the way to healing as fast as they can given your steroid/ anti TNF therapy.

I hope you get the new meds ASAP. I found when I switched from enbrel to humira that Alcura did the switch much faster than the hospital expected because, like you, they already had me on record.

I'm glad to hear that your doctors use steroids with caution, I feel like my doctor just wants to throw the things at me from every direction, I have been offered joint and the 1 off muscle injection of steroids several times this year but always declined because they don't work for me usually and I'm taking enough of the things already!

I did read up on silver based dressings and you're right, its more for infection control rather than anything else....which in my case seems like its pointless. I have only had one infection since the operation in Oct and that was due to being thrown out of hospital 8am the next morning without even a prescription for antibiotics. I'm going to ask the nurse today about the types of dressings you mentioned, from what I have been told the wounds are very clean with healthy tissue that's new but that's as far as it goes, it could just be a case of having a specialised dressing like you mentioned which could give that little bit extra help for healing. Its sad to hear that you had to fight to get the right type of dressings for an ulcer that took 3 years to heal, but it doesn't surprise me that you had to fight for the right type of dressings, it seems like a lot of the managers these days don't have common sense and only look at the short term costs.

As5567

Starburst wrote:

I'm not surprised that you're fed up. You've had such a rough ride. It sounds like a delicate balance between enough medication to control the AS but not so much that it impedes healing.

We are here for you. ((( ))))

I think swapping from Simponi to Cimzia will be helpful with healing, I was taking twice the normal dose of Simponi which is probably playing a big role along side the pred. I have been told the Cimzia usually works for most people rather quickly so if that is the case then I can begin to taper off the pred, hopefully within the next 3 months!