Giving in, calling the docs

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Veteran Member

Date Joined Aug 2005
Total Posts : 590
   Posted 6/13/2007 8:52 PM (GMT -6)   
Hi everyone,

Sorry to complain but I am at wits end!!! I am not doing well, dropping weight (yes I know I needed to lose, had gained so much) and the hematologist will not do anything to help my Porphyria, so I fired him!!!! I am looking for a new one now. In the mean time, I am breaking down and calling the Rheumie, and the Cardiologist. Things are not right, and I know I will be in Limbo with the COBRA insurance so trying to take care of now. The Porphyria is attacking my stomach, and I don't know how my liver is. I am on the Vitamin D and Plaquenil, but the Plaquenil makes the Porphyria worst. Everyone who doesn't get it is on my but for how I am eating but I cannot tolerate gluten. I cannot handle starchy carbs much but need them to control the attacks. I cannot win. I am having the Lupus and Porphyria flare which means hey lets kick the fibro into full throttle!!!!!. My friend went to rub my shoulders and said he had never seen muscles so tight, even after working out. Sorry to complain, but if you look up the information Souls posted on this dam disease, it is not good. I am considered one of the extremes in this as my labs change frequently, like daily with the ANA etc.

I remember when I went to new Rheumie he started to think I was extreme in how I felt but with the news that the Porphyria is here, he is awesome and supportive. My old doctor told me I didn't have Lupus, said I could tan and now I am jacked up!!! The rest of my life I will live like this Ok, I am having a pity party, sorry I am trying to keep my spirits high, I just get angry at times. Everyone says I should be over it but when you know why you ended up like this, it just gets to me sometimes!!! But you know it is bad when they say they you have one of the hardest combonations to treat.

Ok, so I am making all the necessary phone calls, and pray/or good thoughts that I get the Hematologist and the treatments that I need. If I can see this doctor this would be one of the best things that could happen, as they are a bit familiar with this illness. He has to gather my records for first and will get back to me. Sorry to go on, just sick of it being one thing after another, the heart, the liver, anemia, iron overload, etc. I will let Bonnie or Wombles Mum know if I am in the hospital so you all know why I am hiding.

Thanks for listening,
sad sad
sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 6/13/2007 11:18 PM (GMT -6)   

I didn't know anything about porphyria so I googled it and it sounds absolutely dreadful. You apologized for complaining, but if anyone has a reason to vent, you do. In my book venting is a different animal than complaining. I hardly know what to say. Thank goodness you found a compassionate rheumy who's going to do his best to help you, and I hope you have a good cardiologist too. Good for you for firing your hematologist and shame on your old rheumy. Please do have someone let us know if you wind up in the hospital so we'll know how you're doing. In the meantime I'm hoping you get some needed relief.


Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 6/14/2007 9:12 AM (GMT -6)   
Leta, I'm glad you are calling your rheumy - it sounds like things need to be checked out since you are feeling so bad. I'm guessing that treating these multiple illnesses makes your case even more complicated, especially with porphyria. I hope your rheumy can help and that you don't end up in the hospital.

Hang in there and take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 6/14/2007 7:56 PM (GMT -6)   
  (((Hugs))) Bless your heart! You never complain sweetie. You are always upbeat in chat with us trying to cheer everyone else up when you are suffering.... sad .
   I hope this doctor can get things turning in the right direction for you quickly. Hang in there and vent anytime you need too. I'm glad you will have someone post if you are admitted to the hospital. Rest and take care. You are in my thoughts and prayers.
                                       Lots of love and hugs, Babs
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 6/15/2007 12:09 PM (GMT -6)   

Hi Leta.  I haven't been on the forum for a few days, so I'm just reading your post.  I'm sorry you're so sick.  You are NOT complaining sweetie, you're venting.  I had to vent recently and it made me feel much better.  Anything I learned about porphyria in lab school has since been engulfed in lupus fog, so I can't help you, but I wanted to let you know that I'm sending prayers and positive energy. (((hugs)))

Dx: SLE diagnosed in 2005, major depressive disorder, diabetes, fibromyalgia, asthma, gerd, sleep apnea, hypertension, IBS
Tx: plaquenil, methotrexate, Imuran, prednisone 10mg, flexeril, prozac, lamectil, celebrex, lisinopril, actos, lipitor, nexeum, seroquel, advair, arthritis tylenol  PRN: ambien, neurontin, promethazine, xanax, albuterol
supplements: multi vitamin, C, flaxseed oil, calcium/D
             Better living through chemistry :D    Donna

Veteran Member

Date Joined Jan 2007
Total Posts : 610
   Posted 6/15/2007 12:22 PM (GMT -6)   
Hi Leta
Bless your heart. It is very normal for each one of us to vent, and we definitely need to vent. Hang in there and hope that you will find a good hematologist very soon.

Veteran Member

Date Joined Apr 2005
Total Posts : 1529
   Posted 6/15/2007 11:44 PM (GMT -6)   

Have you been able to see any doctors? Hope you're feeling better, sweetie. As the others said, nobody, including you, on here is complaining. This is the one safe place we can all come and report or vent or let off some steam. Let us know how you're doing...

xoxo emmie

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy

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