New to this forum. Input/information appreciated

[Janice]

I am new here. My symptom I have CVID, hashimoto's and gluten intolerance. I receive IVIG every 4 weeks. My symptoms started at the end of May shortly after I returned from a cruise. I came home & came down with bronchitis & was put on antibiotics & prednisone. It took a while for the asthma symptoms to improve, so I ended up on prednisone for appx 24 days. When I began to wean off the prednisone, I began to have severe muscle pain. My doc said it was due to weaning from pred. Well after I weaned from prednisone, I continued to have severe muscle pain in legs, and general pain. Also my blood pressure & heart rate were elevated; my meds have been tripled to get it under controlled. On a bad day, I have severe muscle pain, then the next day muscle weakness. I often feel achy like I have a virus. I have also been having incr. fatigue. My appetite has been decreased & having a dry mouth. Over the past 4 weeks my sedimentation rate has increased from 43 to 53 to 92 to 114. my sed rate is. My good days have become less "good" as far as increasing fatigue/weakness. I do better on days I don't have to work. I limit my errands/trips outside because it tires me out. Any information or input is so greatly appreciated.

[Navigator]

Hi

You do not say if you have visited a Rheumatologist.  You are on some pretty strong meds.  Your symptoms are not necessarily related to having SJS.    The best thing you can do is to evaluate how you feel about your doctor. The most up to date doctors tend to be with teaching hospitals.  Start with getting the best doctor you can....Johns Hopkins is renowned for SJS., Mayor Clinic?< Cleveland Clinic?? Mass General in Boston....there are many very good centers . Don?t know where you live.

[CMNK12]

Autoimmune diseases frequently have myositis associated with them. Getting a patient rheumatologist to trudge through with you is key! Bloodwork can be as simple as a CK- mb to start to look at muscle enzyme leak...then look for the source.
There are many articles on myositis and types and testing. It would be worth your time to check it out. The weakness can be terrible and life altering. Your sed rate is screaming something is up. Infection can cause an increase. But more likely because it was treated it is your AI disease. Steroid induced myopathy takes months of steroid use not short term use.
Good luck and I hope you find answers.CK

[Joe S.]

Welcome to our forum.

it took me about seven years to get a diagnosis after symptoms became bad. I got the diagnosis after I listed my symptoms; dry eyes, dry nose, dry mouth, dry skin, and for our brit friends,  dry bumb. He said sjogrens/S.I.C.C.A.

Find and read "Spoon Theory" on the web to learn about good and bad days.

[Janice]

Navigator, I have an appointment with a Rheumatologist/immunologist/endocrinologist next week on Thursday. I saw him in April when I had been having very mild symptoms. He is considered to be a genius by many. He does a lot of research and I have much confidence in him. I live in OKC, and most of my doctors are through OU Medical Center. Which meds do you mean re: the strong meds? Do you mean the IVIG?  Thanks for your input.

[Carolina]

Hi Janice, and Welcome,

As you know CVID is associated with autoimmune conditions.  I have CVID, and my Immune System attacks me with other biochemicals and does damage to my organs/systems.

The damage of the attack causes Inflammation and the inflammation causes:  Pain, Fatigue, and Depression, and sometimes other negative conditions.

Ask your Immunologist about your experiences, as well as seeing a Rheumatologist.

Hugs Elaine

[Janice]

Elaine, does your inflammation result in an increased sedimentation rate as well. It is nice to hear from a fellow CVIDer. Are you on the PID forum? Thank you so much for your input.  Janice

[irish]

Welcome to this site. I am assuming you are on the IVIG for the CVID. It is very common to have muscle aches and pains with autoimmune diseases. Are you diagnosed with Celiac disease? This can cause the muscle aches as can the hashimotos.

The elevated sed rate shows that you are having increased inflammation. The good thing is that you are going to see this doctor again. Pray that these symptoms don't leave before your appointment. Have you ever been told that you have Sjogrens syndrome?. Sjogrens can accompany any of the autoimmune diseases and is common with thyroid disease.

I have been on IVIG for 10 years for my myasthenia and have Sjogrens, Hashimotos, Bullous Pemphigoid and Autoimmune ear disease and still have a lot of other symptoms plus aching that is not cured by the IVIG. Just the way it is. I have never had any elevated sed rate in my life. Autoimmune disease is really hard to figure out at times and the docs have trouble too.  Write down your ailments and what makes them worse, when they start, what makes them better,etc. Good luck and keep us updated on how things go. Irish

[Janice]

Irish, Yes I do receive IVIG for CVID. I was told I have Mast Cell disorder that affects my GI tract which resulted in my gluten intolerance; symptoms leading up to the diagnosis were horrible. I found a "Zebra" GI doc. He had me start on 1 claritin a day and ursodiol; it changed my life for the better. I got some good news today. My PCP texted me and my sedimentation rate went down to 76; I am feeling more human-like, lol. I have journaled my symptoms on my computer as you mentioned; what makes them better/worse, also I notice that my symptoms improve towards the evening oddly. My doctor told me that one of the Sjogren's antibodies was positive, but he said that something else might be going on that caused it to be positive. He said I may or may not have it. He tested me for RA, lupus and scleroderma also. I am going to a specialist next Thursday who can help sort it out. All of lab results will be in by or before I see him, and he will have access to all results.  Thanks for your thoughts & input.

[Carolina]

Hi Janice, no nothing happens to my blood, i "just" have inflammation which causes pain, fatigue and depression (and itching and burning skin) but I do not have autoimmune disorders, or rather I don't have disorder caused by attacks on my organs/systems by autoantibodies.

Our Immune System uses many biochemicals to regulate activity and some of them (probably cytokines but this isn't known for sure) are also attacking me.

My husband is a research Immunologist and he understands this as well as can be. But I do not.

Hugs,  Elaine

[warmwaters]

You mention you're seeing a dr at Oklahoma.  If for some reason you need a second or different rheumatologist, I used to see Elizabeth Chakravarty when she was at Stanford.  She's quite good, very knowledgeable, and gets how hard this is on our lives.

She moved to Oklahoma for research. I don't know if she's currently taking patients, but FYI.