View Full Version : Newbie

07-23-2008, 08:18 AM
Hi everyone,
I was recently diagnosed with SLE in April after a flare sent me to the hospital. I have the usual suspects in terms of symptoms (rashes, joint pain, swelling, fatigue, etc) but I've also had a lot of neurological symptoms associated with my lupus and am looking for some answers. Has anyone else experience pressure in their arm which causes numbness and tingling? At first I thought it may be a blood clot but it's been two weeks with no change in swelling/heat/color. It feels like I have a blood pressure cuff on my forearm.
Can anyone help?
Thanks! I look forward to meeting you all :)

07-23-2008, 11:32 AM
Hi Kimmy..

Welcoming you with open arms...

I have no experience with this. I would suggest you to make an appointment with a doctor to see what is going on. Two weeks is a long time...

Early detection is key to managing our health...

Especially having Lupus we have to have our symptoms assessed as early as possible.

Someone is sure to pop in that has had/have this. Is it the whole arm? Hands? Certain fingers? Sounds like a nerve problem..could be from CNS involvement, a nerve impediment in the shoulder, neck, upper and middle back.... Carpal Tunnel...heart...ah, a myriad of things...

Don't wait too long before making an appointment...

Keep looking for your wellness...

07-23-2008, 02:07 PM
Thank you, Oluwa!
I did ask the doctor about it last week and she seemed to think it may be due to being weaned off prednisone, but it's been over a month since I've been off. For now, she wants me to keep an eye on it. I was just wondering if anyone else had experienced this before. The pressure is at the elbow and the numbness is from then down to the fingers.
Thank you for your reply.
Be well,

07-23-2008, 02:13 PM
Hi Kimmy;
I agree with Oluwa, you should have this checked by a doctor as soon as you can. “Numbness” implies loss of function in one or more sensory nerves, and “tingling” typically results from partial injury or irritation of those nerves. If it is Lupus related, it is most likely Peripheral neuropathy, or polyneuropathy. These are general terms for disorders of the peripheral nervous system. The peripheral nervous system is the network of nerves outside the central nervous system (the brain and spinal cord) connected to the spinal cord. Peripheral neuropathy is a common condition that can cause numbness and tingling. It can be caused by diseases that affect nerve function (such as Lupus). Diabetes is one of the most common causes of peripheral neuropathy.

Other causes of peripheral neuropathy may include: Excessive alcohol consumption over time, Nutritional deficiencies, Nutritional excesses; excessive doses of pyridoxine (B6), for example, Toxins; puffer fish poisoning (fugu), poisonous mussels, stinging caterpillars, for example,
Infection or inflammation (lupus again), Overexposure to toxic chemicals such as mercury or lead, and Tumors.

Whatever the cause, you should not wait to have a doctor examine you to determine the exact cause. Let us know what you find out and what treatment your doctor prescribes.

Peace and Blessings

07-23-2008, 03:08 PM
Hi Kimmy and welcome -
I agree with the others that you should have this checked out. Very often a pinched nerve in the neck can radiate down your arms.
I do know exactly what you are talking about however, as I have this feeling/sensation with my legs. I always say it feels like there are elastics at the top of my legs and that it doesnt feel like the blood is getting all the way there. My legs swell when I feel like this though, and, actually can be sore to touch. I have told my docs about this (including ER) and they checked my heart to see if there were a circulation problem and it was fine. I STILL have it almost everyday, particularly if Ive done alot the day before, and I KNOW its not normal.
You should see a doctor (usually a neurologist deals with numbness) to determine whats causing this.
Again, welcome

07-24-2008, 05:12 PM
Thank you all for your kind words and advice!
Last week, I saw the doctor about my arm and she had attributed it to steroid withdrawal, but said she'd keep an eye out for it. I have been off steroids for over a month and tapered off very slowly. I was just wondering if anyone had ever experienced this before.
I am glad to have found such kind and knowledgeable people for support.
Hugs to you all!

07-26-2008, 12:18 PM
Hi Kimmy;
Often, when tapering steroids, we will find that our symptoms re-appear or that new ones appear. Many of us have found that we must remain on a small dosage of steroids in order to keep symptoms at bay (continue to suppress the over active immune system). Often, we are prescribed another immunosuppressant drug (also known as steroid-sparing drugs) to take while tapering steroids or while maintaining a low dosage of steroids. Most steroid-sparing drugs help the Corticosteroids to suppress the immune system. This means the dose of corticosteroid can be lowered, which helps reduce the side-effects of the corticosteroid.

Common steroid-sparing (adjuvant) drugs are:
Azathioprine (Imuran)
Cyclophosphamide (Cytoxan, Endoxana)
Mycophenolate mofetil (CellCept)
Cyclosporin (Neoral)

If your symptoms continue, do not abate, or if new ones appear, perhaps you can talk to your doctor about the possibility of some of the above mentioned steroid sparing drugs.

I wish you the very best
Peace and Blessings

07-26-2008, 12:24 PM

Even it is from steroid withdrawal, the symptoms should still be treated.


07-26-2008, 12:56 PM
Hi Saysusie and Oluwa,
Thank you for the insight. I believed that I was possibly starting a new "flare" but I guess it could be the same one which is just uncontrolled as of now. I will definitely speak to my doctor soon. I've also begun keeping a "symptom diary" to monitor my current symptoms.
Thank you all for your insight and support, it is greatly appreciated.

07-31-2008, 09:46 AM
I finally went to the Lupus clinic today and saw one of my favorite doctors. She doesn't think that the weird arm numbness and pressure is from the prednisone, but has no idea what could be causing it. I'm seeing the neurologist in September. Her thought is that it may be due to the marrow "peeling" or gone off about 6 verterbrates in my spine. In the meantime, she is hesitant to prescribe prednisone or methotextrate to help alleviate other symptoms. She has, however, prescribed Elavil and a topical anti-inflammatory for my muscle pains. Has anyone been on similar medications? Do they help?
Does anyone else have a lot of neurological issues, and have any answers/suggestions?

Thank you all for listening. I'm really upset with these new symptoms that keep popping up without explanation, but I guess that's what Lupus is all about right?

I hope you all are doing well!

08-02-2008, 11:48 AM
Hi Kimmy;
Yes, unfortunately, that is part of the heinous nature of our disease and one of the reasons that it is so difficult to diagnose. Symptoms come and go, new symptoms appear and old symptoms get worse. Test results change as our symptoms change - negative on one reading, positive on the next. There is no way to predict anything with Lupus except the fact that it is an ever changing disease that can affect every part of our body (hence the name "Systemic"), from our skin, to our muscles to our internal organs!
I've never taken Elavil, but here is some information about it:

ELAVIL (aka: Amtriptyline): (FYI - this drug has been known to cause Lupus-like symptoms as a side effect; Lack of energy/fatigue (common), Skin conditions, Skin rash
Erythema annulare centrifigum (rare)-chronic occurring red raised rash.

For Lupus patients, Elavil is generally prescribed for neuropathy ( a disorder of nerve(s) apart from the brain and spinal cord which can cause tingling, numbness, unusual sensations).
For Fibromyalgia patients, Elavil is given for pain as is works on the neurons that carry the pain signal.

Elavil is actually a Tricyclic antidepressant. The common side effects include: Anticholinergic effects (e.g. dry mouth, blurred vision, urinary retention, constipation, palpitations, tachycardia, associated sublingual adenitis or gingivitis). Weight loss or gain. Tinnitus, drowsiness, nervousness, insomnia, Hypotension, dizziness, rash sweating, confusion, mania, psychosis, heart block, arrhythmias, extrapyramidal symptoms. Gastric upset. Endocrine effects (e.g. changes in libido, impotence, gynecomastia, galactorrhea). Rarely, bone marrow depression, hepatic toxicity, seizures, peripheral neuropathy, severe cardiovascular effects in patients with cardiac disease, photosensitivity, Dysarthria, stuttering, renal failure. Withdrawal symptoms.

Peace and Blessings

08-03-2008, 06:03 AM
Hi Saysusie,
Thanks a lot for all this information, I really appreciate it!
I hope you are well,

08-03-2008, 08:33 AM
I was on Elavil (amytrptaline) when I first became sick. I did not really notice any improvement, except that it did help me sleep better. I stayed on that for about 8 months or so, and then a rheumatologist at B&W switched me over to Celexa, which is an SSRI, and not a trycyclic (both are anti-depressants). She switched because there were far less side effects with the Celexa apparently. I have been on it ever since (about 7 or 8 years). I have not had any side effects from this med at all except for decrease in libido...(bummer for hubby sometimes..lol).
Of course, everyone is different...I still think that your arm could be a problem with a pinched nerve in your neck...that is a telltale symptom, but of course - I am no doctor...lol!
Have you hurt your neck in any way? Whether muscular or nerve? The smallest inflammation in your neck can lean on a nerve which can shoot right down your arm causing weakness, numbness, tingling, etc.
Sometimes, a chiropractor can help - but Im VERY LEERY of chiros sometimes...They feel they can help EVERYTHING, and that is just not the case. But, I have a couple of friends who have had exactly what you have, and it has been a problem in the neck...Just an idea from your local, friendly lupie!!
Love Lauri

08-04-2008, 10:26 PM
You are most welcome :lol: I am doing good enuf I guess!!!

Peace and Blessings

08-05-2008, 12:51 PM
Hi Lauri,
Thanks for the information on Elavil. I'm on day 2 so can't tell for sure whether or not it is working, though I am sleeping better at night also! :)
I haven't had any pain in my neck at all, but your hypothesis sounds possible. Today, I noticed generalized weakness and weird sensations in my right arm which is new. I work with Occupational therapists so she did some tests and conclude that overall my right side is not doing well today. Perhaps this is related to what's going on in my left arm? Hmmm. I should be seeing a neurologist on Friday so I'll be sure to mention it. This morning I was having trouble using the mouse on my computer and repeatedly kept dropping things I was holding in my right hand. I became so frustrated! :mad:
I'll ask the neuro about the possibility of inflammation or pinched nerve in my neck, thanks for the suggestion! :)
I hope you are doing well,