[mumoffive]

Hi
firstly appologies for dipping in and out of the group,
and for coming here to request help more than offerring it.
I am afraid there is so much happening in our life at the moment I have not been able to give very much.
Yesterday I ahd a rhuematology ppointment. My symptoms have escalated dramaticall over recent weeks and my pain has been severe and unrelenting...i know I am not alone in that but I have been coping less and less.
the Rhumatologst was lovely...he was very concerend by the amunt of inflamation in my feet and hands and that has always ben my worst bits. He is also cncerend about my dizziness and los of balance. So we have increased plaquenil to 200 am 100 evening. gone back onto predniselone and now introduced fentanyl patches.
He did warn me that the side effects could be severe at the start and he was not wrong. he suggestd these would subsid over the first week...I hope he is right. I can cope with the drwsinss i am exhausted all the time anyway so solong as the drowsnees spaced out feeling subsides over the week to allo me to drive again that will be fine. The nausea and vomiting though is really trying! i have always had a fear of vomitting...I suffered from severe sickness in pregnacy that saw me admited to hospital for fluids iv. however, he pain relief has been nothing short of miraculous...I can walk up and down the stairs without crying in pain. I think I can even pu up wih the vomiting if I can be rid of that pain. My ankles and wrists are sore but nothig like tey were but I can almost straihten my fingers and I can put one foot in front of the other without that searing pain.
thanks for listening!
hugs

 

[Katharine]

Hello Tina,

I'm afraid I don't know anything about those patches you mention. Like you I have always had a thing about actually being sick and wouldn't like that at all

Anyway, I wanted to just say hi and sorry things are really not so good for you now.

I am, however, really glad to hear you talking so well of your rheumy and that he takes you seriously. I will never forget your pain and frustration in the beginning when you weren't getting anywhere with the docs

sending plenty of hugs,
:hug: and do "pop in" again soon,
Katharine

 

[raggedyann1]

Tina,

I am trying to remember what narcotic pain medications that you have been taking before the Fentanyl patch? It is usually a step-up medication from Hydrocodone/Vicodin and other mid-range pain medications. Most mid-range pain medications have to be taken every 4-6 hours although there are some that last longer by the addition of Paracetamol (is that the name in the uk? its called Tylenol here in the USA). What dose patch did he start you on? I ask because I had no nausea/vomiting at all and very little drowsiness when I was put on them. I was started on a 25mcg per hour patch for 2 weeks and then stepped up to a 50mcg patch. I have been using a 75mcg patch for 3 years now. Of course I was alreay on Methadone when the fentanyl patch was added but when I started methadone I didn't have any trouble either.

If you don't start seeing relief from the symptoms by Monday please call your doctor and see what can be done. Perhaps you needed a milder dose for a week or two. It could even be that you will need a different pain medication, not everyone tolerates these strong opiates.

Take care,
Karen

 

[mumoffive]

Karen I was taking co dydromol 4 times a day and had tramadol for whn I could be sure there was someone for the children at night. Tramaol made me so drowsy.
the patch is 25mcg an hour
but I get nausated ery easily erythremycin has me so sick i can't function.
the pain relief has been worth it..so long as it wears off withinthe week as he suggested I can put up with it...any longer and may just wither away.
I have become less drowsy and more alert throughout today so I hop that within the week I will be safe to drive again. Being unable to drive is a huge draw back when we have as many appointments as we do.
I am now taking 300 mg plaqunil a day, codydramol, brufen is available to me if i need it, predniselone 10mg for now. asprin 150mg, calcium, folic acid nd I am ure I fogot somthing but cant remember what...and of course he pach.
Thanks for your support there.
hugs

 

[eagle55]

Hi Tina. my meds are srarting to kick in sooner that i thought i am oone the patch 50 m i change it every 3 days but i have had very little side effects.. i got to go i am falling asleep at the wheel i will email you later if you do not mind. take care Sue

 

[mumsy613]

Hi

I have used 25mg fentanyl patches twice. Once with Shingles pain, the other time with prednisone withdrawal pain.

Both times I was sleepy for just a few days, then I was fine to drive. I did not need to increase dosage since 25mg was enough for me.

It is a great pain killer. Take care not to open up the patch in any way because the doses can then become way way too high.

I have found over-the-counter motion sickness tablets (dramamine....original or non-drowsy formula) to be very helpful with all kinds of drug nausea. I take it according to directions on the package 1/2 hour before taking any pain killer....I am very nausea sensitive to those drugs. In USA, lots of Drs don't know about this although surgeons have known about it for a long time (post anesthesia nausea).

Mumsy

 

[BigSis]

Can anyone tell me the UK name for Dramamine?

Thanks

 

[lazylegs]

Hi Tina,

I have missed you in chat. Sorry to hear you are in such misery. Erythromycin does the same thing to me. Can the doctor switch you to another antibiotic?

Take care,
Lazylegs

 

[Leora]

Fenatyl (Duragesic) Patches...

Hello Tina,

I'm real sorry to hear things are a bit rough at the moment. Just know there's always a light at the end of the tunnel. That's what keeps me going. Just thinking positive. I hear you though, easier said than done. At times that's very true!
I used to be on plaquenil but had extremely and I mean extremely severe reactions from it. I was beyond violently ill with that stuff. I am amazed a lot of people I talk to take it and have absolutely no problems with it. I was also on another medication with the same reaction... meth (something)... I cannot for the life of me remember the name of it... it was bad. At the time I was on such medications, it was very early into my diagnosis of Lupus and FMS.... I was on I think Lortab but things got very, very bad in I think 6 or 8 months to the point I couldn't even walk without feeling like I was going to pass out from pain. My pain specialist put me on the patches... at first he put me on 75mg patches, then increased that to 175mg (I was wearing two patches).... I was doing absolutely great, able to function, work outside relentlessly and tirelessly without problems... but about two years later, pain was coming back with a huge vengeance.... The doctor said I had to put up with it... I did for another full year but in a complete vegetative state.... I was much worse than anything ever... it was time to consult for a new doctor... this was the hardest part because I was in such pain and had very active out of control lupus flare up at the time... I was in very bad shape and went to a doctor who I will not name or entrust the doctor to a soul, ever... but he even said I looked like I was ready to check out... it was that bad... I stopped the patch and cannot remember what he had me on... Maybe it was Oxycontin... I'm not quite sure. But QUITE FORTUNATELY I am no longer seeing that "doctor".... I'm seeing an excellent lupologist/rhuematologist. (Spelling??) it keeps appearing with a red underline which indicates the spelling of the two words are incorrect. I've been trying to figure it out but nothing comes up. Anyhow... I'm still to this day on Oxycontin at 80mg 3 times a day and I take Roxicodone (sp??) 60mg whenever I need it for pain. I have been doing perfectly fine and have been noticing less and less need for the Roxycodone. Yes, I'm on very, very powerful dosages of narcotic... the pain is beyond imagination. There are days when the pain is so blinding I don't dare get out of bed just to go to the bathroom because I will do ANYTHING to avoid throwing up and passing out. I pass out only when pain is beyond imaginable. I know when I'm in trouble when I get very clammy... Whenever that happens which is usually a few times a day, I immediately get to bed and lie down in complete peace and quiet without anyone disturbing me. The slightest scent will botch things up... Every now and then our daughter just has to have her most irritating ****** horrific incense going... the scent of the incense or any incense, perfume or any odors that is offensive to me will immediately make me sick. (very sick). It doesn't faze my daughter in the slightest bit. I did tell her not too long ago if she so much as uses those ****** incense that I will personally and literally find them, dunk it in water and trash it. It is that bad. I wish it were a light scent but it's so unbelievably powerful/strong in odor that it escapes from her shut door of her bedroom.
Anyhow I do apologize for wasting your time with all of that... I would like to mention that you can get free Johnson & Johnson Bioclusive #2463 Transparent Dressing. It's hypoallergenic. You put it over your patch... the part of the dressing that goes over your patch isn't sticky at all. It's sticky on the edges. It completely prevents the patch from curling, getting any water in it, etc. It lasts the full 3 days its supposed to last for.... You get a full box sent to you in the mail... you just have to call Johnson & Johnson and tell them you're on the patch and they'll send you a box for 50 of the dressings... before you are finished with the dressing, they'll include a postcard for you to fill out and you simply send it out and you'll receive another package. It's completely free. You do have to write down your doctor's name who prescribed the patches. The patches were a life saver for me. I hated it when it curled up, or if I went to scratch my arm where the patch was it would slide and the tape part would become lose.... since I live in the south, it gets extremely hot... I warn ANYONE on the patch to be incredibly careful in the sun if you're on the patch. The patch literally burned my skin and I don't want to get graphic here... but it was so bad that I had to have surgery to have this treated. I had six surgeries to take care of everything. Stay far away from the sun whenever you're on the patches.
BTW, as far as nausea goes, ask your doctor to prescribe you "Zofran" they come in 4mg and 8mg. It's an absolute godsend for me. To this day I cannot live without it and yes it's very, very expensive. But that's fine because I'm very allergic to Phenergan and something else I cannot think of at the moment. Zofran is the one and only anti-nausea medication that works like a charm most of the time.
BTW, did you have to have your eyes examined before starting plaquenil? I did... my ophthalmologist strongly believes my current eye problems I've been having is the result of plaquenil. When I was on it, things would get very blurry... not not a normal kind of blurred vision... but rather than take his word for it, I went to two other specialists and they too said the very same thing that my current ophthalmologist said. That was particularly surprising. I tend to take some diagnoses with a grain of salt and if I think it's important to follow up on, I will... but if I personally know what caused what, then I won't bother.
I look forward to hearing from you and hope you feel a lot better real soon. Just take it real easy and don't overdo it. :calm:

 

[mumoffive]

Thank you ll for your responses. I did go to the doctor and got some antiemetics...I also took a two day break from th patch as it was jonathan;s 18th birthday and i wanted to be able to take his class out for dinner, we had a lovely ime with them 5 studnts and 3 staff...all the students hae severe learning difficulties but were absolute darlings and really enjoyed their meal and brithday cake.
when I put the patch back I used opsite to ocure a portion of the pach so only geting hald the dose and today I replaced t again but using 3/4 touching my skin so hope I am going to be able tog et back o the pain relief I had last weekend...today i am just begining to feel better from pain at 3 hours into 3/4 patch...
i am taking 200mg plaquenil, and yes i have eye tests regularly because there is a deterioriating eye condition in our family anyway.
I am also taking 10 mg predniselone, co-dydromol, asprin, folic acid, 15 mg methotrexate and calcium tablets...I take brufen when needed too but try to avoid hat whn posible because of the kidney/liver probs I have had kidey involvement in the past and dont relly want to go down that road again.

i have lost aothr half stone over the last week Icant afford to lose anymore weight my clothes are all falling off me...i am 2 stone lighter since the begining of this flare 14 mnths ago.

I really am sure that stress is aggravating the situation as we have this week opned a huge new pandoras box of problems with Social Services that has mant we are now starting a legal battle under the european court of human rights this alongside the local governement ombudsman tackling our case against the county and district councils.

I am trying to look to th positives in life too. Jonthan has just celebrated his 18th birthday we never expected him to reach adulthood it is an amazing achievement that he has, in less than 2 months we will hopefully be clelebrating rosie's 16th birthday, her prognosis was 5 years at the most...and david and i will celebrate our 27th Wedding anniversary in may too which is quite something thse days isnt it?

Loads of love to everyone and thanks for your support and ideas..both here and privately.
Hugs

 

[Staarzz8]

that must be hard I have E.D.S which is no where near what you've been through but I did only find out this year about it and had to quit contact sports. Which means hockey my favorite sport. My gur friends are always saying it was my fault well I hope you get better soon

 

[raggedyann1]

It is very dangerous to suddenly stop using the Fentanyly patch or any other Schedule IV (or II) narcotic, the withdrawal symptoms can be quite severe and can be fatal in some cases. Most patients adjust to narcotic medications and the nausea problems go away after a short period of time. I have often had some nausea when I have started new pain meds but it has always gone away after a few days or less.

Karen