F/U with PCP--need some guidance

[BonusMom]

Yesterday afternoon I had a routine follow-up with my PCP, an internist that I've seen for some 6 years. I hadn't seen her since mid-December, right before the SLE and SjS diagnosis.

She asked about my current symptoms and I told her it's mostly the dry mouth and eyes and fatigue/brain fog that are most bothersome. She reviewed my medication list. Finally, she said that she doubts I have SLE because I have no organ involvement. She gave me the name of two local rheumy's (mine is some 2 hours away, but I was referred to her by my motility specialist) and STRONGLY suggested I seek a second opinion. She said that Prednisone is a strong drug and doesn't believe it's warranted in my case. Told the PCP that I was comfortable with the SjS symptoms because of how dry I am, but I was not accepting of the SLE diagnosis because I have very few of the "normal" signs of SLE.

Finally, she listened to my heart and asked how long I'd been wheezing? I have never had any symptoms of asthma or the like. I haven't had a cough/cold in a long time. In January, prior to starting any new meds, I started having a dull ache in the upper left side of the midline of my chest. When I walk from the transit bus stop to my office, four blocks, I notice a tightening in the chest and blamed it on cold weather. In the evening I would have the dull ache when I was watching TV. I didn't bring it up previously because it doesn't happen all the time and I don't want to be perceived as a hypo-which I told the PCP. PCP said that I don't need to be worried about appearing like a hypochondriac--and just what I need--another diagnosis to add to my list.

Anyway, she wrote me a prescription for an inhaler (albutitrol), 2 puffs, 4 times daily, as well as an order for a chest xray. Her assistant came in and did a peak flow meter-200/200/250 and O2--96%.

I had the xray done today at lunch and should have the results--hopefully--by tomorrow. I need some input as to what you on the Forum think might be causing the dull ache/tightening; should I get a second opinion; how in the heck could I suddenly develop asthma (if that's what it is) at 44 years old? I have never smoked, although both of my parents did (not mom any longer , but dad still does--just not around me).

Now, with the extra special rash I found on the underside of the breast when I woke up this morning, I feel like I'm falling apart. Turning 40 was the start of all this and mother always told me that "life begins at 40." Needless to say, I'm getting a bit discouraged.......

[kim31072]

I developed asthma in my twenties and had never had issues before..I was like WHAT?and it is not something I have to medicate for all the time it usually just acts up when I am ill.

I would follow her advice on the rheumy part.Most PCPs are not equipped(medical training to deal with SLE which is why they send you to a specialist)SLE does not have to have organ involvement to be a correct diagnosis(not saying you do have it..Ihope you dont  )but the organ involvement is seen in the more severe cases..and pred is commonly used.It is a harsh drug unfortunately it and Plaq are all we have for mild cases they break out the stronger DMARDS for ones that dont respond to pred/plaq.It is used to help get lab numbers into a more acceptable field(as it does suppress immune function whithout the chemo/transplant aspect of the sronger drugs)reduce inflammation and swelling and relieve pain.

So I personally would seek out a rheumy and let them investigate further.There are many aspects to SLE and SJS (both can cause organ issues not to say they will but they can)and some individuals that are diagnosed do have organ involvement develop with time(usually within the first 5 yrs of diagnosis)so for her to say she doubts you have it because you dont have organ issues now is a wrong comment IMHO.Get a GOOD rheumy.One you like and feel comfortable with..let them be your provider with the SLE/SJS as they are trained for these deceptive illnesses and can help you manage your care.use the PCP for run of the mill things that you would have before you had these labels put on you.Flu,sinuses,sore throats..let your rheumy manage the specialized part and the PCP the non.

Just make sure they play well  together and the PCP wont constantly question his/her tactics or meds or treatment plans.Find one you are comfortable with and like as it will be a life long relationship that you will depend on to help make you well,alleviate your fears,and help you manage your disease.

A good rheumy is the best thing you can get and I only wish we could all find great ones.Its like finding a good hubby..sometimes you gotta kiss alot of frogs before you can find your prince.

good luck and take care

Kim

[Scottietottie]

Hi BonusMom 

My dx is lupus/sjs overlap based on SjS symptoms but lupus bloodwork. I don't have organ involvement - unless they count thyroid but I've always been told its a separate AI disease.

When you mentioned tightening and pain in the chest did anyone suggest you get an ECG?  About a year ago now hubby was having pains similar to what you describe and he was dxd with angina.

Take care - Scottie 

[Scottietottie]

Hi - me again 

My 21 year old daughter was sent to the hospital recently because of chest pains. She was told to use her inhaler more often (she doesn't even know when she picked up the asthma dx because she never went for a consultation about it)

She was also told she was hypoglycaemic but that the pain was prolly costochonditis (connective tissue inflammation round the sternum and ribcage)

Take care - Scottie 

[Katybarstool]

Hi Bonusmum

I was diagnosed with athma and bronchiectasis at 47 - I was pretty shocked too. I use three inhalers and my chest is pretty good. The SJS diagnosis came when I was 50.

Good luck with the inhaler.


Kathy