[Sonya in KS]

My name is Sonya & I live in Wichita, KS. I was just diagnosed with Systemic Lupus, Vasculitis & Reynauds on April 2, 2008. I had had extreme pain in my ankles & feet for about a year. The fingers on my right hand would turn very cold & purple off & on for some time. My PCP sent me to both a Kidney specialist & an RA doctor. On my 1st visit to the RA he sent me directly to the hospital where I spent 12 days. Because of the extreme pain that I was in I ended up in a drug induced sleep and in the intensive care unit the first 3 days but didn't fully wake up for one full week. I am currently taking Plaquneil - 200mg twice a day, Cellcept - 500mg twice a day, Lyrica - 150mg three times a day & Predisone - 17.5 mg once day. The doctors currently have me on a sliding scale on Predisone. I will take each dosage for three weeks and than decrease it by 12.5 mg until I reach 10 mg. My question is regarding Plaqunel, Cellcept & Lyrica are these lifetime drugs? Do you ever not take any of these drugs once you are on them?
Sonya

 

[Lily]

Hi sonya,

I am sorry that you got so ill before diagnosis and treatment, unfortunately sometimes that is the case.

At least now you sound like you have a good doctor in your Rheumy and that he is treating this appropriately.

It's quite probable that you will remain on these drugs for a long time. The Plaquenil is definitely one that we stay on forever and the Lyrica is for nerve pain etc. so that's probably another you will stay on. As far as the Cellcept goes then it's a steroid sparing med and very helpful to control Lupus that involves the organs. You will probably stay on that too and be able to get your Pred right down or maybe even wean off it altogether at some stage (desirable considering the long term side effects and reluctance for doctors to use it as a maintainence therapy these days).

It will depend on how well you do weaning off the Pred as to your Cellcept dosage. Whether they would consider lowering the dosage or even drop it at some stage in the future will depend upon several things. You may do really well once the Plaquenil has kicked in (can take anywhere from 3-9 months) and they may wean you off Cellcept in the future. It will depend upon your particular circumstances and your Rheumies observations as to how well your Lupus is under control.

Multi-therapy is common and we are closely monitored and our disease has to be damped down and kept that way to avoid what happened to you recently.

I hope that you are feeling much better these days and wanted to welcome you to the site. Any questions you have we will do our best to help with so don't hesitate to ask.

love
Lily

 

[Sonya in KS]

Lily,
Thank you for your reply & answers. Not only do I have good RA & Kidney doctors but my PCP is absolutely the best. I am very blessed to have such good doctors and on top of that all three of these doctors are still very new to me as I changed my PCP the 1st of November just last year. My old PCP was doing absolutely nothing to find out what was wrong with me, she was just giving me pain meds to mask the situation. They originally thought that the Lupus had affected my kidneys, but fortunately it did not.

I am feeling much better. I have no feeling in my left foot and very little feeling in my right foot which prevents me from driving. So I'm very dependent on hubby & friends right now and they aren't sure if or when I'll get the feeling back. At least the swelling has gone down. I can get around the house slowly and without assistance, but when I go out I always use a cane.

I'm 62 and have worked on & off over the years, but did not have enough credits to qualify for SS Disability even though the doctors have declared me disabled. My husband is 65 and is semi-retired. He still teaches part-time in a very small private school which offers no benefits. I applied and qualified for Medicaid but the spend-down is so high that it is almost what my husband makes per year. So I'm not sure what benefit that is doing me unless I would have to go back into the hospital and than I'd quickly make the spend-down.

Of course on the Predisone I've gained almost 35lbs. I have worked very hard for the past 4 years to lose 65lbs and now to gain 1/2 of it back is very discouraging. I'm to the point now that my clothes do not fit and are uncomfortable.

I'm frustrated right now over all the extra medical bills that are coming in and having to pay out of pocket for my medications is just overwhelming. I bought 3 of the 8 meds on Thursday and it cost over $600.00.

I know I'm ranting, but I need to vent and at least maybe you all have been through this and will have some ideas.

Sonya in KS

 

[keebler]

(((Sonya)))

Welcome to the lupus site. It is nice to meet you.:shake:

Lily has given you great advice.

Having SLE is a roller coaster ride of emotions. You have come to the right place. We all know how you are feeling and what you are going threw.

Could you talk to your doctor and tell him that you don't have insurance for the meds? Maybe he can help you by giving you some ideas of where you could get help?

Hopefully you will start getting some relief from what you are going threw. It does take awhile for some meds to kick in.

Take care,
Lyn

 

[Sonya in KS]

Thanks Lyn for your reply. I have talked with my doctor and she has referred me to a pharmacy that works very hard to charge the lowest prices in town. I did get some good news today in regards to the Medicard spindown. They have applied some old medical bills and so the spindown is considerably less, something we can manage.
I am learning about the roller skater ride of emotions. I can be fine one minute and in tears the next.
Now if I can just get my eating in control that will help.
I been trying to quilt more which helps keep my hands & mind occupied.
Where in Iowa are you? We have a son & family in Cherokee.
Sonya in KS

 

[Mrs M]

Hi Sonya just wanted to say welcome to the site.

I'm not diagnosed yet but have been coming to site for a short time and everyone is great. You will get so much help and advice as I have. Without this site I'm sure I'd have gone mad:lol:

Take care

Mrs M

 

[Sonya in KS]

Mrs. M thank you for the welcome. I'm glad I found the site and hoping to learn lots from everyone.
Sonya in KS

 

[sheila t]

Sheila xox

 

[LBH]

Hi Sonya!

Hi Sonya! Welcome to the Lupus Site and glad to meet you. Some medications might be a lifetime thing but depends on how well controlled they get your lupus. I have been on prednisone since 1992 and never was able to get off that drug. Down to a lower dosage but can't get off the drug now. Cellcept will most likely be only temporary until they get you in much better shape. Hope you get well soon and am glad to meet you here!

 

[lizzymiya]

Hi Sonya! Nice to meet you! Hope you get well soon!