Hi I did not mention that joel was on 1000 mg of cellcept 2* a day 60 mg of prednisone and plaqunil plus duragisic patches and darvocet for pain.
He has severe pain and swelling in his knees and shoulders usually rates it a 8\9 when he's in hospital.
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replied October 3rd, 2003
Active User, very eHealthy
Welcome Bajubba
Hi there! I am lady brannon. First off, I want to welcome you to the forum. It is nice to meet you.

I am very sorry to hear about your son. It sounds like he has been having a rough time of it.

I can think of a few things...And some questions for you.

1) depression is very common in people with chronic auto-immune diseases. Has he seen a psychiatrist or psychologist? That may help with the "death" concept...And believe me, I know how he feels. I have been there a time or two myself.

2) on the flip-side, if he or you would rather he not see a psychiatrist, it does help to be around people who know the ins and outs of living daily in pain. See if he would be interested in joining here or check in your local area for a lupus support group. The lfa has support groups throughout the country.

3) his cellcept dose 1000mg morning and night is not the maximum dose. Have they stated any reason to up that? I know when I was still having lupus symptoms, my doctor maxed the dosage for me.

4) you speak of his pain. What did they give him to help with the pain?

5) has he tried hot baths and while in there *very lightly* working the hurting joint?

6) has he tried those new items *thermacare?* that give off heat and will attach to the body? Those are great to help relieve pain while you are up during the day.

7) is he getting enough sleep because of the pain? Lack of sleep can exascerbate the lupus.

8} how are his stress levels? Stress is nasty for lupus patients. If you aren't sure, ask him.

9) are his doctors responsive? Do they talk to you...Listen to you...?

10) has your son kept track of his daily ailments? Keeping a diary can help the doctor in making better decisions on his treatment.

11) if he goes into the hospital with 8 or 9 level pain...Then that is *exactly* where he needs to be. Unfortunately, that is just the way it is sometimes. I have been in the hospital four times in the last year and a half and each time the pain was almost unbearable.

I hope this helps in some small way. Remember...We are here for you and your son.

Hugs,
ladybrannon
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replied October 3rd, 2003
Thank you lady b for your quik reply! Joel is on a antidepresent he will not seek counseling as he feel's they do nothing for him.
As for pain he is on a pain patch and endocet. I keep a diary of what I see.]
his doc's are very receptive to us his rhumy is wonderful. But they are getting frustrated to because it has been so aggresive with him.
He does the hot bath's have not tried the patches yet but have done icy hot and wood lock oil. I will see if I can get him to come on here!
Thank you again.
Bobbi
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replied October 3rd, 2003
Active User, very eHealthy
Hi bobbi,

your son is going through a lot. Pain everyday is not easy. I know. I have questioned the quality of my life many times. However, I have always been able to pull through with an extremely helpful and supportive family. It sounds that your son is lucky in that respective too. Just be there for him, let him lean on you...He *does* need that.

Keep in mind that prednisone can cause *serious* mood swings...There is also a thing called steroid psychosis. Have you talked to the doctors about this. Steroids, while life saving for a lot us, also cause a lot of problems too. You may want to talk to the doctors about the moods...

Tell your son that we would love to talk to him. This is a great place to vent because we understand.

This is also a great place for you too. Lupus affects the whole family! My husband can verify that. Our lives have changed so much since my diagnosis. He married this young, vivacious woman and within two years (at a whopping 26) he had a sick person who considered being able to walk a *good* day! In fact, my husband even goes to the support group meetings with me. He vents there as much as I do.

Lots of hugs,
ladybrannon
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