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YPT
11-10-2008, 10:14 AM
Hi everyone,

I just got my prednisone increased to 40mgs a day. I am getting the Plaquenil today, too.
Gotta go.

KathyW1958
11-10-2008, 10:42 AM
Hi YPT,
I am glad that you are getting the Plaquenil today. Once you get started on the Plaquenil they may start tapering the Prednisone with in a month as it takes about 3 to 5 months for the Plaquenil to get in your system and fully working. You should start feeling a lot better and you may even be able to come off of the Prednisone all together. Plaquenil is a very good drug for Lupus. Keep us posted ok. Oh and also take the Plaguenil with food. Remember to get your eyes checked every 6 months and you should have no real problems. I have been on Plaquenil for over 14 years.

Hugs,
Kathy

YPT
11-10-2008, 03:25 PM
Hi Kathy,
When I went to the doctor today, she did not like the swelling in my arms and legs. That's why she upped the dose of Prednisone. I only got half of the prescription for the Plaquenil ($$$$$$$$ shortage). My Rheumy also put me on some "Anti-Depressant" to help me to sleep at night. I surely hope that helps. I cannot stand this waking up over and over at night. Today the pain was very bad in my arms (below my elbows). Even right now, I am in a lot of pain.
My Rheumy also wrote me a script for a pulminary test because I can't do a lot of walking or any type of activity without getting winded. My x-rays were negative and every stress test I have taken in the past have all come back normal. That makes me angry because I know what I am feeling and the doctors make me feel like I can't possibly be winded because the stress tests come back negative.
Anyway, enough about me. How have you been feeling? Keep me posted and I will try to answer speedily.
Thanks again for responding.

Theresa (YPT)

KathyW1958
11-10-2008, 05:21 PM
Hi YPT,
I am doing ok tonight, but still have some pain in my knees, wrists and back. I think that I am finally getting over with a flare. This happens to me a lot, but then again, I have had Lupus SLE for over 44 years which is a very very long time. Lupus is a disease that tends to run in cycles big time. I cause a lot of my problems, because every now and then, I let myself get to much sun and that is disasterous for me. I am extremely sun sensitive. I am also starting to go through menapause and that does not help at all. I will be glad when I get through that mess and be done with it. I hope that you get to feeling better. Post and let us know what the Pulmonologist tells you ok.

Hugs,
Kathy

YPT
11-11-2008, 08:00 AM
Hi Kathy,
I have not make the appt for the pulmonary doc yet. A little tired of seeing doctors right now. Crazy huh? Anyway, I am still not clear about these flares. I feel bad for a period of time and then I feel ok. Then out of the blue, I am angry, weepy, hurting, tired, etc. I cannot tell when they will come or go. Are the flares supposed to last for a certain period of time or is it different for everybody? Still new to this and I don't know what to do.

KathyW1958
11-11-2008, 09:17 AM
Hi YPT,
This is the way Lupus is. It can hit you without any warning and leave just as quickly. I am serious. You can wake up feeling very good and then bam it will strike. I think that is why this illness is so awful and boy they do need to find a cure for it. I hope that once you get stabilized on medication that it will not be as rough on you. You will learn with time what tends to trigger a flare and I will tell two things that are very big factors in flare triggers and they are stress and the sun. I hope that this helps you somehow.

Hugs,
Kathy

YPT
11-12-2008, 01:25 PM
Hi Kathy,

I am currently experiencing a lot of stress. That would seem to explain this "flair". My arms, below the elbows, hurt very badly. My fingers, forget about it. I am also having problems with my belly and stomach. When I eat, I feel so full, but am still hungry. I sometimes feel like I have a tumor in my belly. I do suffer with chronic constipation so I guess the bloated feeling is from that. That sleeping medicine my Rheumy gave me is not helping me to sleep. My sleep pattern may even be worse since I took it.

KathyW1958
11-12-2008, 02:04 PM
Hi YPT,
I am sorry to hear that you are experiencing a lot of stress. Stress can trigger a flare faster then anything else it seems. You have to find a way to alleviate the stress big time and I know that that is very hard when you are hurting, but it is a must big time.

Have you tried some otc stool softeners? It sounds like you have IBS with all the other problems and that can be agravated by stress too big time.

Is there any way you can get some financial aid to help with the cost of your medications? Have you looked into Humana Perscription program?

Oluwa who comes in here knows about some type of tea that will aid in sleeping, but I can not think of what it is just off the top of my head. I hope that she pops in here and she can help you with that.

I hope that you get to feeling better. You know though the Plaquenil takes about 3 to 5 months of taking it to get the full benefit of the medication in your system and then you should start to feel better. It is a very good drug. I personally dislike Prednisone due to the side affects and it can cause damage to the joints if you take for a long time at high doses. I hope that I have helped out some here.

Hugs,
Kathy

YPT
11-14-2008, 08:52 AM
Thanks for answering. I am just a waddle of a mess. We are currently being evicted because I am not working now and the rent is behind. That is the big stress maker in my life right now.
I have truly been pacing myself and I know that stressing is not helping, but in a situation like this, what can I do? I trust God, though because He has never seen me out on the street. I just need to know where I am going.

KathyW1958
11-14-2008, 09:42 AM
Hi YPT,
I feel so badly for you. Do you have any family members that can help you out? I know my daughter and her husband went through the same thing and we had them live with us until they could get back on their feet. I think that family should help out in emergency situations like this. I hope that you both can get employed again. I will keep you and your family in my prayers.

Hugs,
Kathy

YPT
11-15-2008, 04:49 AM
Hi Kathy,

One of the problems that we have is that my husband has CP and he is 57 years old. Because I am only 44, he gets denied senior or handicapped housing because I am not old enough nor do I have the SSI paperwork stating disability.

I wonder is there any advocate for us. My husband has chronic asthma, cp, one hip, right hand is withered and problems with the discs in his back.

Him, work? Not now. Even if he did go back to work, his medical benefits would be cut.

We are in a catch 22. Prayer works. I know!

KathyW1958
11-15-2008, 05:00 AM
Hi YPT,
Have you tried to get disability for yourself due to the Lupus? I think that you should be able to get it. I could get it, but we have to much money and assets from what I was told every time I got denied. You are not in that situation. I think you should go right to the Social Security office and apply immediately. I can not understand why they would say that you are to young when your husband is so totally disable. I think if I were you I would seek out legal aid. Oh and StJames who is one of the moderators could help you in this department too. Saysusie and Rob are moderators too and they could contact him on your behalf. I think I will PM them too ok. I will do what I can to get you the help that you need.

Hugs,
Kathy

KathyW1958
11-15-2008, 05:06 AM
Hi YPT,
I just sent Rob one of the moderators a personal message to see if there is anything that he can do to help you guys out. He is disabled and maybe he can help you and I told him to contact STJames one of the other moderators too. I hope that we can get you the help that you need.

Hugs,
Kathy

sits_inthe_corner
11-15-2008, 06:24 AM
Hi YPT

I'm on plaquenil, it makes me very groggy. My family doctor has me taking both pills right before bed with some food so it wont upset my stomack.

I sleep through the groggyness. I have never had trouble sleeping...mostly I have trouble waking up. I can sleep through just about anything.

If you notice you are having any troubles with the plaquenil call your doctor and ask if there's a better way you can take it to manage the symptoms, i.e., all of it right before bed (with food).

rob
11-15-2008, 07:06 AM
Hi Theresa,

I've read all your posts, and I don't believe you mentioned applying for Social Security Disabilty, but you are considering it. I also see that you have a definite diagnosis of Lupus, and Sjogren's. I would suggest that you immediately apply for full SSA disability benefits. You can apply online, and get the ball rolling right away. The Government SSI website has a very easy to follow format, and it explains the application process, and what you need to do to recieve monthly benefits.

To start, follow this link-

http://www.ssa.gov/applyfordisability/adult.htm

I recieve full disability benefits. It took somewhere around 3-4 months to be approved. The timespan can be variable though, so the sooner you apply, the better. You can also apply by phone, as well as talk to a SSA representative if you have any questions/concerns during the application process.

Here is the #

1-800-772-1213

I'll see what else I can find in the way of non SSA assistance and a possible advocate for you. Hang in there.

Rob

YPT
11-15-2008, 07:43 AM
Hi Kathy, Rob and sitsinthecorner,

Thank you all for replying. Good news! Just yesterday, I called social security and filled out an online application. I have a phone interview on Dec 3rd. I am glad that I finally got unscared and made the call. I have had so many horror stories about getting SSI or SSDI or whatever I am supposed to get.

Next, everytime I eat, I get this bloated feeling. It feels horrible. Whatever I eat or drink makes me feel like my intestines are pushing up into my heart. I literally have to take deep breaths and sometimes I cannot lay down because of the discomfort.

Last night I had terrible pains in my chest (left side) and in my neck (right side). I experienced similar pains in my neck about 30 minutes ago. My hands are particularly swollen today and when I look at my feet, I hurry and look away because it frightens me.

See, I am used to working and doing things without being so tired, achy, swollen and forgetful. I was the one who always said, "I will never sit home because that's not me". Now, I have to eat those words and eat humble pie, too. :roll:

I feel like I am a burden to my husband and family. I am ashamed that I have allowed Lupus to take control of me like this. I am so sad right now that I shouldn't even be writing right now, but coming here helps. :wink:

Out of 13 children, I am the only one with this disease. I wonder why I was chosen for this. God knows but I wish He would tell me. :)

Ok, enough about my woes because at least I am still alive and able to function. Somebody didn't make it today.

-------------------------------------------------------------------------------------

Hi Theresa,

I've read all your posts, and I don't believe you mentioned applying for Social Security Disabilty, but you are considering it. I also see that you have a definite diagnosis of Lupus, and Sjogren's. I would suggest that you immediately apply for full SSA disability benefits. You can apply online, and get the ball rolling right away. The Government SSI website has a very easy to follow format, and it explains the application process, and what you need to do to recieve monthly benefits.

To start, follow this link-

http://www.ssa.gov/applyfordisability/adult.htm

I recieve full disability benefits. It took somewhere around 3-4 months to be approved. The timespan can be variable though, so the sooner you apply, the better. You can also apply by phone, as well as talk to a SSA representative if you have any questions/concerns during the application process.

Here is the #

1-800-772-1213

KathyW1958
11-15-2008, 08:16 AM
Hi Theresa,
I don't know what happened to the yahoo messenger thing. I requested to add you and it is still saying that add request pending. I really do want to talk with you.

I am glad that you have applied for Social Security.

Try to message me again ok and give me permission to add you to my messenger.

Hugs,
Kathy

rob
11-15-2008, 08:17 AM
That's great news Theresa. I found some other resources that deal specifically with rental assistance for the disabled, and the elderly. There are programs in place that do allow for a non-elderly disabled person to live in an assisted elderly housing development. There is also info for mixed families. Mixed meaning an elderly person married to a non-elderly disabled person, or a disabled elderly person with a non elderly partner/spouse. As well as every other combination of age and disability.
Here are some links-

HUD disabled renter assistance-

http://www.hud.gov/renting/index.cfm

http://www.disabilityinfo.gov

Public housing assistance directory-

http://www.hud.gov/offices/pih/pha/contacts/index.cfm

That should get you started at least. I'll dig around a bit more and see what else I can come up with.

Rob