The Lupus Forum banner
21 - 36 of 36 Posts

Premium Member
Joined
3,311 Posts
Hello again Soundy,
Thank you for letting us know how you got on. I'm not sure if I'm missing something but I can't help but wonder why they're not considering a maintenance med once the steroids have kicked the activity into touch. I had a tapering dose of steroids while the Plaquenil was taking effect then I was prescribed Methotrexate when the Plaquenil didn't quite sort it out on it's own. Thankfully since then I've never looked back.

I know we're all different and we respond differently to meds but it seems miserable that you're having to wait until the lesions become mid to bad before dealing with them.

Quite a few people drive some way to get a good Rheumy, 2 hours is a bind but if you get a good consultation and treatment plan it might be worth it.
Take care,
Jess.
 

Registered
Joined
78 Posts
Discussion Starter · #23 ·
Jessica, they are kinda leaving it to me to chose to start or wait. I decided to start. Schedule is crazy. Dosing similar to allergy dosing.
Day 1: 8 mg before breakfast, 4 mg after lunch and after dinner, and 8 mg at bedtime
Day 2: 4 mg before breakfast, after lunch, and after dinner and 8 mg at bedtime
Day 3: 4 mg before breakfast, after lunch, after dinner, and at bedtime
Day 4: 4 mg before breakfast, after lunch, and at bedtime
Day 5: 4 mg before breakfast and at bedtime
Day 6: 4 mg before breakfast
Then 4 mg before breakfast daily for 2 weeks after last sign of any rash. So inspect body for new rash or when there is no rash daily.

Also put me on Boniva as I am high risk for osteoporosis. My mom has it along with her three sisters and both grandmothers had it. So does my brother
who is 2 years younger than I am and my sister who is 2 years older than me. They said the steroids can worsen or cause osteoporosis .
So we will see how things go. Started Tuesday. Crossing fingers.
 

Moderator
Joined
4,458 Posts
I am sorry but I am alongside Jess... I do not understand the treatment or the reasoning at all.... and if that was my steroid schedule I would be heading to a new Consultant.

Of course I am not a Rheumatologist/Dermatologist but in 10 years on here I have never seen a schedule like it , steroids at bedtime are usually a no no as they keep you awake; certainly I have at times seen Pred spread over 2 doses for a good reason....not sure what your Drs reasoning may be ?

It is almost as if they do not understand what tapering means...so instead of gently decreasing the dose in the morning only, they are tapering the times you take it.

I am glad that they are looking after your bones but a month of steroids shouldn't cause too many issues for you.... a Dexa scan may be a good idea generally to see what your bone density is like regardless as you have a family history of osteoporosis.

Hopefully you will keep a diary of all you are doing and show the new Consultant... I will be interested to hear his /her thoughts.

take care...鈥︹...Claire
 

Administrator
Joined
9,127 Posts
When I was initially diagnosed I had to use a weird schedule as I crashed between the normal prednisone dosage times. My schedule also included a bedtime dose. I didn't sleep much but it did begin to calm my symptoms down.
 

Moderator
Joined
4,458 Posts
It would make more sense if it was a 'tweak' of an existing schedule if there were probs with crashing etc, but to have this schedule as an initial treatment plan is strange...鈥 well I guess there should hopefully be some relief from taking some steroids at least.
 

Registered
Joined
78 Posts
Discussion Starter · #28 ·
Last time I was put on oral steroids they started me with low dose and went up to a higher dose , stayed there for a while then
tapered off. I think their rational this time is starting high to get to my system and then coming down to get me off them. They say
this schedule will keep me on them for a shorted period time. I honestly don't know anymore. I am just following instructions and praying.
Was looking at long term low maintenance dose information and find positive and negative answers to it.

As for the night doses, I rarely sleep past 2:30 and get up do laundry. read, watch movies, meditate etc then crash around 5;30 and
get back up at 6:30 for the day. Sometimes I am lucky and get in an afternoon nap.. This has pretty much been my schedule of sleep since
brain surgery. Something was damaged in removing the tumor and I just don't stay asleep. That said, as far as the steroids hindering sleep
I saw no difference. They've had me on several sleeping pills and some antidepressants to help me sleep. I slept more but they left me groggy
and hungover feeling during the day. The best sleep I get are the weeks of Book-fair at school, the week of Day Camp in the summer and like
these past two weeks painting nearly 400 shirts for school. I have to absolutely wear myself out to sleep through the night. And when I say
sleep through I mean getting up anywhere after 4:00am.

My rash is fading fairly well. Areas my clothes rub like across my shoulders, around my collar, and waist band are still has a bit of rash. Only bad side
effect I've had are a blue million tiny skin tags that are on my neck, upper chest and under arms. I called yesterday and was told sometimes steroids cause
collagen to clump together and form the skin tags. They feel like grains of sand when I rub my hand over them. They said don't worry we could
remove them if they get very big and bothersome. Was also told that they may go away on their own. Scratching at the rash I have scratched
some of the tags off. They suggested applying tea tree oil to them. Gonna look up some information on this. They don't hurt but are annoying.
 

Registered
Joined
78 Posts
Discussion Starter · #30 ·
I don't think I said before but the drug of choice was Methylprednisolone. And didn't answer Claire on bone scan. I had a density scan about
8 months ago as a routine because of family history on moms side and the nail patella I inherited from my dad. It was within normal range then.

I've been putting lotion they told me to use on skin areas where I apply Clobetasol to help with thinning skin. I put it on the tags too. Cetaphil daily hydrating Lotion
with hyaluronic acid. I also scrub them with the net shower scrubby I use and many scrub off. They are annoying and a bit itchy. Can't ever
just solve one problem. We have to create another. But in the big picture the tags aren't that bad.

The rash is still persistent on upper left arm, across upper back and around my hips. Was suggested that I go with minimal clothing a day or to to give
skin a rest at pressure points.
:cold: We keep the house cool. Right now it is 39* outside and 61* inside. I'd prefer warmer but there are two occupants who like it cool and say it's easier to add a
layer than for them to run nakedo_O. So kinda hard to go minimal clothing during day. Did ditch bra and have on my husbands shirt, pajama pants, thick
fuzzy socks and gloves. I would wear a nose cap if I had one. Raynaud's and cold weather / cold house don't mix. I sent pictures of remaining rash to
doctor Friday and today getting renewal on Methylprednisolone. I guess until two weeks after last sign of rash this will be my routine.

Do have an appointment with a new dermatologist in closer to home Columbia but couldn't get in til Dec 11th. One in Nashville would see me the week after
Christmas. So plan on seeing the guy in Columbia and checking him out. I don't have to have him agree with what I think should be done, but need him to
listen and just treat me. Even if he is not sure what to do, decide what he thinks is the best route and try something. Anything. I have been passed around
like a plate of rolls on Thanksgiving dinner. Have had to change doctors when my insurance change and one that couldn't get things to work so sent me elsewhere.
Have you ever felt like a doctor was just frustrated and wanted to get rid of you.? That sounds awful but a few over the years couldn't figrue me out and so
passed me on without trying new things.
My PCP has tried a few things that have relieved issues while I wait to see the next guy in a string of specialists. At one point when I had my neurologist/brain surgeon,
an urologist, rheumatologist, dermatologist, optometrist etc. They didn't work well together and would disagree about the prescriptions the other prescribe.They constantly
contradicted each other. It about drove me insane. This was early on after SLE diagnosis. Only my neurologist I kept. He was just watching the brain tumor and never
prescribed anything til the pain pills and antibiotics after brain surgery.
I fired them all except my brain surgeon and told my PCP I was not going to anymore -ologists and that if he couldn't help me too bad. That's when he prescribed
some antidepressants and after a couple weeks we started over looking for new doctors. That was about 12-13 years ago. Can't count the people I have seen.

this is my upper arm with it's scales. Kinda tricky to take on my own and doesn't look as bad as real thing. It goes from shoulder to elbow. You
can see a few scabs where I clawed til it bled and the now yellowing bruising from clawing on the left side of picture. At times I have had this
covering 75% or so of my body. Right now it isn't irritated but as day wears on it will redden and as my daughter the nurse says it will be "angry"

Have a good day. I'm gonna go turn up heat in living room since have house to my own for a while. Have a new book to read and easier to do if not shivering.

Human leg Flooring Wood Metal Elbow
 

Registered
Joined
78 Posts
Discussion Starter · #31 ·
Still just scaly on my upper arm and a bit under neck. Most of the skin tags have been scrubbed off.
improved but draggy feeling and a bit irritable. Don't know if its the medicine or just getting weary
of dealing with things.
Just found out this week we are going to be put back on a Cigna plan. I hope it pays as well as it did when we had it
before. BCBS-TN has not paid well on me at all. Won't cover brain scans that they my brain surgeon said should be
done yearly after brain surgery. I think it was 2009 when I had last one. If tumor is growing back we'll never know. That
last scan cost me $5,800 after insurance reduction but the didn't actually pay anything on it.
 

Registered
Joined
78 Posts
Discussion Starter · #33 ·
Lazylegs, yes we've check around to find lower price. Still more than I can come up with. and We just found out that they
are keeping us on BCBS plan. Company says the CIGNA cost too much. Come to find out it was about $6o more a month and the
company didn't want to absorb that. They should have let employees vote if they were willing to pay the extra. I wish I could
afford to drop the insurance we have and get our own. It would be over $1000 for the 4 of us and we only pay $380 a month.
company pays rest. But insurance is basically a catastrophic policy and pays very little unless you are really sick as in near death or
in serious accident. anyway....

Rash is all gone. Still on low dose until next week. I think why it finally cleared over the weekend was the steroid shots in my
knee my new ortho gave me. My knee was getting worse as other shots wore off. They did an x-ray of knee due to swelling where I
smashed it in my fall but just showed no break. He move my joint around and my joint shifts side to side instead of forward and back. He gave
me a shot in knee Friday. Saturday I hated him. Sunday a bit better and Monday pain gone. Have an MRI today because he thinks
something is torn. Before shot I had to have help getting up and down. Now I'm a walking functioning human being again.

And even though the rash had improved with pills it had not gone away. Over the weekend it vanished and once again I am itch free. I did have the ortho
look at rash and document it. I told him how it went away when they gave me the steroids after the fall and as they wore off came back. I will see
him Monday to go over MRI and will have him document the rash disappearance after he gave me shots. I have called for appointments before
and had to wait for a while only to have symptoms clear before appointment. So doctor documentation seemed a good idea even if he is not a dermatologist.
 

Registered
Joined
78 Posts
Discussion Starter · #35 ·
Well dermatologist has decided to keep me on maintenance dose to see if it keeps rash at bay. I'm happy with that. I had pictures I
had taken from worst of rash and as it cleared along with orthopedic doctor's verification of the rash when I saw him first time
and it's disappearance after steroid shot. Dermatologist said this helped in his decision as if I had showed up rash free he
wouldn't know where to go. The pigment where rash has left scarring on upper arms and on my legs just above ankles.

As for knee. I have a small meniscus tear that hopefully will heal on it's own. Also a small bone chip that is free floating and
it is what I have been feeling when my knee would lock. For now just watching. May go in if it does't heal or bone chip gets more bothersome
and have the meniscus repaired and chip sucked out.
 

Registered
Joined
346 Posts
I am taking prednisone which started with 3 per day, but I lost track of when I was suppose to go down to 2 per day and then one per day, and then continue on for a few months with the one. All of this for the lupus discoid places on my forehead. They itch, feel like a burn, and then peel. I didn't use to get these.
 
21 - 36 of 36 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top