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07-14-2008, 05:39 AM

It has been a long process of trying to fiquire out what is wrong with me; at first the doctors thought I had cancer but after the bone marrow biopis came back with no cancer cells and finding out that my bone trabeculae is extremely thickened, it was a good clue along with other signs. I had a ana titer of 320, always tired, rash on the head that was ever constant under stress, butterfly rash when I was around 24 and now my fingers are starting to look strange.

I am on steroids (short course because my dr does not believe in long term usuage) and hydroxychloroquine 400 mg a day. Hopefully it will help my hands but after being on it for two weeks my hands have not changed.

I am not concerned that I have Lupus but I would like to feel better and be able to lead a very active life.


07-14-2008, 06:18 AM
Hi Kamillah,
Welcome to the site. You said that you have just started the Plaquenil (Hydroxychlorquine) about 2 weeks ago. Plaquenil takes several months for you to get the full benefit from it. It is an excellant medication for Lupus. I have been on it for 14 years. I was diagnosed at the age of 36 with Lupus and Sjogrens. I know it took about 5 to 6 months before the Plaquenil kicked in real good. Hang in there with the medications ok hon. There are a lot of good folks that come here and they will have a lot of information for you. I am relatively new to the site.


07-14-2008, 06:22 AM
Hi Kamillah....

Welcoming you with a warm hug...

Hydroxychloroquine aka Plaquenil usually takes about 5 months to start to show any improvement. Some, like I can have improvement happen within 2 months.

Your doctor is probably having you on a short duration of steroids because he may feel you are ending a flare and do not require long term, or because of your current symptoms, give you relieve now till the Plaquenil can take effect...

What do you mean by your hands look strange? Blue? Red mottling or lace like appearance? Disfigured?

Many of us can lead an active life..many have to change their lifestyle to a moderate. To manage Lupus the key is living, eating and exercising in moderation...too much of a good thing can cause a flare.

You will find you way to maintain, manage your wellness, your illness and know your triggers, know what to avoid...

Read about the forum...many of us have much experience...ideas on how to maintain our wellness.

Saysusie, our dear moderator has much information. She is the One who can provide you really with all the in and outs of the medication we receive...she'll pop in to meet you...

Chat, use the search feature to find a more detail of who has what, or talking about what above...This is a safe place to talk about anything...

See you on the board...again welcome and happy to have you as a part of of family...Hugs.

Keep looking for your wellness.

07-14-2008, 09:56 AM
Hi Kamillah;
Welcome to our family :lol:
Plaquenil and Prednisone are the cornerstone treatments for Lupus. I understand your doctor's trepidation about long-term use of Prednisone and no one wants to be on it for an extended period of time. But, I just want to talk to you about the benefits of Prednisone (in spite of side-effects) when used for Lupus.
Prednisone is a synthetic hormone commonly referred to as a "cortisteroid." These are nothing at all like anabolic steroids! Prednisone is very similar to the hormone cortisone, which the body manufactures naturally. Prednisone does several things in Lupus. In part, prednisone acts as an immunosuppressant. The immune system protects against foreign bacteria and viruses. In illnesses, such as Lupus, the immune system produces antibodies, which become overactive and cause undesirable effects. These antibodies attack normal tissues, causing the symptoms of Lupus. These illnesses are referred to as "autoimmune diseases".
Prednisone suppresses the production of these antibodies. This suppression can make it slightly harder for you to fight off infection but the important thing that it does is that it stabilizes the immune system if it is overactive with an autoimmune disease (such as Lupus). Although immunosuppressive drugs can have serious side effects, they can be of great value in the treatment of systemic lupus erythematosus (SLE) because they can prolong life, preserve kidney function, reduce disease symptoms, reduce damage to vital organs (such as the kidneys and lungs) and sometimes they can even help to put the Lupus into remission.
Steroids used alone to treat major organ involvement in lupus must sometimes be given in high doses. This increases the risk of short-term and long-term side effects, which may sometimes be worse than the disease itself. Immunosuppressive drugs can be used either in addition to, or instead of, steroids to spare you some of the undesirable side effects of steroid therapy.
Thus, immunosuppressive and cytotoxic drugs are used in the treatment of lupus for two major reasons:
1) They are potent drugs which help to control disease activity in major organs, including the kidney, brain, cardiovascular system, and lungs.
2) They may reduce or eliminate the need for steroids (cortisone derivatives such as prednisone).

Prednisone should NEVER be stopped immediately. You must taper your dosage until you get to a negative dosage. But, many patients have found that, when they taper their dosage, many of their symptoms re-appear. It is for this reason that they either remain on a small dosage of Prednisone or they are prescribed another immunosuppressant medications (as I mentioned above) in order to reduce flare-ups while maintaining a very low dosage of Prednisone. Some of the immunosuppressant and Cytoxic medications generally used for Lupus are: Imuran, Cytoxan, Methotrexate, and Cellcept.

Also, using these other drugs while tapering the prednisone can often mean that you can taper down to a negative dosage of Prednisone, but remain on a dosage of these other drugs.

As Oluwa and Kathy mentioned, Plaquenil works very well for several symptoms of Lupus. However, it can take weeks to months before you feel the full effects of Plaquenil. However, once you do fee/see the effects, the drug continues to work reducing symptoms. Many patients have remained on Plaquenil for years.

I hope that I've answered your questions. Please let us know if you need anything further. Again...welcome to our family :D

Peace and Blessings

07-14-2008, 01:51 PM
Hi Kamilla and welcome,
You will find the information you get here is incredibly reliable and accurate. Some of these people know more than some doctors!!
As Saysusie said, some people stay on low doses of prednisone to keep their symptoms in check. I am one of those people.
I was sick all winter, and the docs kept giving me a "taper" of prednisone (start with an amount of prednisone, then GRADUALLY decrease it). Every time the taper would get to a certain level, my symptoms would come back. My symptoms were so bad, I had to leave my job - I was sooo sick. Fianlly, the doc put me on both prednosone and plaquenil. I am on 20mg. a day - everyday - and 400 of plaq. I have been MUCH better ever since. I am hoping when I see my rheumie on the 28th, they can decrease the prednisone, or I can come off of it completely. I do have side effects (hard time sleeping, sweating), but they are NOTHING compared to the symptoms of the flareup I was in. You have to be able to function as best as possible, and thats what Im doing today. My fatigue was better in DAYS, my pain too...
I haveonly been on the plaquenil for 1 1/2 months, so Im not sure if its completely in my system yet, but until it is, Im happy to take prednisone and deal with the side effects. Its not even a hard decision for me!
Hope your symptoms are under control soon, and keep us posted!
Again, wecome!

07-18-2008, 08:09 AM

Thank you for all the information. to answer the question about my hands, they are starting to get deformed, my pinky finger is sagging in the middle and and the tips are pointing upward. My middle fingers are pointing toward the side noticeable. My index fingers are doing the same thing as my pinky. It is not very pretty to say the least.

My husband who is also an internal medicine doctor is calling to get me into a lupis clinic. The hand has happened just before I was put on medications, I had not had this happen before. The only thing I noticed before this happened is I woke up with stiffness in my hands. this is something new in my disease.


07-18-2008, 08:24 AM

Are your fingers weak? Nerve related, tingling, numb? Tendons stiffing? Rheumatoid Arthritis?

Did you mention your hands to your doctor before being on the medicines...

Be sure to let them know...

Be well..hugs,

07-18-2008, 02:08 PM
I believe joint deformity is a major sign of rheumatoid arthritis. There are very good meds out there now that prevent permanent damage to the joints such as Enbrel and Rumira. I know two people with RA who have said that Enbrel has changed their lives! It also works on pain, fatigue, etc.
I was under the impression that permanent joint damage does NOT happen with lupus. Am I wrong?

07-19-2008, 12:44 PM

Lupus Arthritis
Lupus arthritis causes pain, stiffness, swelling, tenderness, and warmth of joints, and several joints are involved at one time. Joints farthest from the trunk of the body are affected most commonly, such as:

- fingers
- wrists
- elbows
- knees
- ankles
- toes

* The inflammation is symmetrical in distribution, which means it affects similar joints on both sides of the body.
* Generalized stiffness that occurs upon awakening in the morning will gradually improve as the day goes on
* Later in the day, joint pain and fatigue may return.
* Puffiness of the hands can occur.
* Recurrent attacks of arthritis are experienced by one-third of those with lupus.

Compared to rheumatoid arthritis, lupus arthritis is less disabling and it usually does not cause severe destruction of the joints. Fewer than 10 percent of people with lupus arthritis will develop deformities of the hands and feet. These are associated with weakening of cartilage and bone and can be seen in the x-ray of the joints. Referred to as "Jaccoud-type deformities," these are reversible conditions.

Signs and symptoms of rheumatoid arthritis may include:

* Joint pain
* Joint swelling
* Joints that are tender to the touch
* Red and puffy hands
* Firm bumps of tissue under the skin on your arms (rheumatoid nodules)
* Fatigue
* Morning stiffness that lasts at least 30 minutes
* Fever
* Weight loss

Signs and symptoms appear in smaller joints first
Rheumatoid arthritis usually causes problems in several joints at the same time. Early rheumatoid arthritis tends to affect your smaller joints first the joints in your wrists, hands, ankles and feet. As the disease progresses, your shoulders, elbows, knees, hips, jaw and neck can also become involved.

Signs and symptoms of a rheumatoid arthritis flare
Rheumatoid arthritis signs and symptoms may vary in severity and may even come and go. Periods of increased disease activity called flare-ups or flares alternate with periods of relative remission, during which the swelling, pain, difficulty sleeping, and weakness fade or disappear.

07-20-2008, 08:21 AM

thank you for the information it was very helpful and also the med information.

This is exactly what has happened to me what you have written about the Lupis
* The inflammation is symmetrical in distribution, which means it affects similar joints on both sides of the body.

Both my hands have the same look with the same joints.

* Generalized stiffness that occurs upon awakening in the morning will gradually improve as the day goes on

I did not have this before about threee weeks ago and then suddenly my dh noticed my hands and said it must be the Lupis.
* Later in the day, joint pain and fatigue may return.
* Puffiness of the hands can occur.

exactly what I am experiencing, thank you so much for this information.

This is what has happened to my hands so far. My doctor knows about this and I am having so more blood work done on Monday.
this is what is wrong with my hands and the doctor told me it is classic of Lupis not RA.
morning stiffness with bilateral 5th PIP hyperextension with ulnar deviation; also involvement of 2nd PIP joint


07-28-2008, 03:56 PM
Hey Kamillah,

You're welcome on the info...

How are you today...did you blood work results come back from last Monday...

Hands feeling better? Mine too always hurt to some degree..especially the middle joint on all my fingers. Never leaves, always feels tight and stiff too, that it has become my norm...

Buy bigger handle toothbrushes, find user friendly hair brushes...easier to hold eating utensils. Buy already chopped vegetables. I use a wand type of dish washing tool. Holds the soap in the big handle....hard to grip a dish cloth while spinning a glass. Buy a lighter iron, or use a dry cleaners.....little things like that can make all the difference.

Enjoy the night..