Oct 18, 2008
This is not all of what happened, but will give you a little idea of what occured and the variety of issues involved.
Stopped the Rebif about 2nd week into Feb. 08
This is what I brought to the Allergist:
■ Dx in 2007 with Multiple Sclerosis
Prior to dx, was given Xanax .25 mg to take daily (varied from 3 to 1 per day as needed)
■ September 2007 started Rebif (interferon beta 1a), subcutaneous injections 3x’s a week
Med side affects:
▸ flu like symptoms, feeling of something in my lower throat
▸ dry skin and hair, tiredness (but unable to sleep at night)
■ October - November (approx) 2007 started Resoril (temezapam) for trouble sleeping (varied from 30 to 15 mg as needed in per day)
■ January 31, 2008 Allergic reaction:
▸ Began on January 31, 2008 with itching back, and legs
▸ Two weeks prior to this, was extremely hot, back felt like it was on fire, which followed with hive area on face, which I did not feel and only observed upon looking in mirror, thought it was weird, however thought nothing of it, and it faded
■ January 31 on:
▸ Itching was extreme, included the entire body from head to toe
▸ All surfaces of body would get welts, small or large in large areas or small additionally, small mosquito type white ones that varied in size
▸ Skin was red
▸ Hair follicles would be raised and skin would appear and feel like sunburn and itch
▸ If body warmed by clothing, blankets, room temperature or by touch, and or the slightest compression, would have a worsening of symptoms
▸ Had bruising with raised blood to the surface like small little dots over the bruised area
▸ Small blood dots to the surface of skin other than bruised areas were, behind knees, back, underneath of arms, and some random areas
Spoke with Neurologist about possibility of allergic reaction to Rebif. Did not feel it was the meds. However agreed I could stop for a few weeks.
Went to MD who said it was Uticara and edema, and hypersensitivity. Did not feel it was the meds, and prescribed prednisone. Prednisone did not stop the reaction and it continued. Added Benadryl which helped the itching until it wore off.
Went to the ER, was given Solu-Medrol and provided option to stay for a work up. I declined. Started an additional protocol of Prednisone double the previous dosing.
Shelly Lowe March 10, 2008
Skin appeared burnt and red, and was very hot throughout.
Stopped Rebif, and took temezapam and xanax occassionally. Symptoms began to decline slightly.
Stopped temezapam and xanax. Reaction began to decline slightly further.
Unable to sleep over weeks due to prednisone, and took temezapam, and had increase in burning and itching 24 hours later (next night). Took benadryl and subsided. Haven’t taken them since then, as feel was a definite increase in reaction.
Currently not on Rebif, temazapam, or xanax, and continuing to progress positively, however, still have burning in lower back, and fluid in legs and back which gets worse upon standing.
Started taking potassium a few days ago.
Short Version Timeline (dated approx):
• January 31, 2008 Full blown reaction for almost 3 weeks (details above)
• February 11 (week of) Had days and nights of rapid heart rate
• February 15 Cut water intake and swelling tapered off slightly, as did body heat, heart rate and pulse
• February 18 (approx.) Continued improvement, and would react occasionally seemingly for no reason, or pressure induced
• February 28 (approx.) Tapering of reaction continues
March and April:
• Burning in back, and fluid retention, overall variety of hives happen only sporadically
Post April -
Burning skin on back continues but mild, may be related to parathesias. However it started from the onset of the reaction
* October 21, 2008 re-started Rebif: No immediate allergic reaction
* Have typical side affects, they are not near as strong as when I started originally in SEP07
* To date (29DEC08) have not challenged the xanax and temazapam