Trying to get an accurate diagnosis
Posted , 9 users are following.
My partner has been ill for coming up on 4month. He's 29 non smoker non drinker. Works every hour for our family but unfortunately after a bad cold he was sent for further ct scans etc. After oxygen levels dropping to a low of 83 he was admitted to hospital for 2 weeks. He had blood tests every day and after talks of sarcoidosis he then had a small nose biopsy and a bronchoscopy of the lungs taking away 2 small parts. We were very hopeful this would give us a definite answer but unfortunately we were told it wasn't enough. He has been started on 8 steroid tablets every morning for 8 weeks with the talks of an open lung biopsy. As a family we are really struggling and as a partner I feel I'm not understanding as much as I should. Has anyone had this uncertainty before? Also has anyone been on the steroids and noticed a difference. I really enjoy this forum and although I am not the one with the health problems it does give me hope that one day our family can go back to normal. Thank you
0 likes, 31 replies
Katlis shelby92952
Posted
Hi there I was on prednisone however it made me sicker I put on 20 lbs and it didn't even help my breathing but everyone is different I have been off work since June 8/16 my joints and rib area have pain and at times u can feel like ur having heart attack ur Dr should be sending ur partner to all different specialist cause this disease can effect ur organs I've seen cardiologist arthritis specialist dermatologist and eye dr. Ur partner may feel like a lab rat sorry I've just been through soo much and now I've also been told I have lofgren syndrome as well.
shelby92952 Katlis
Posted
Thanks so much for the reply. He's had a lot of tests done and seen a lot of specialists. He is under a respiratory Dr at the minute and goes back again in 4 weeks to discuss fur there option. Our fear is now that the lungs may be damaged in scaring which we have been told this is not treatable. There's so many things I wish we had asked now at the time. Thank you
dnr77 shelby92952
Posted
First, has ur partner had lung ct scan. It will show if lymph nodes are enlarged. Most usual way if it's affecting breathing. My husband recently had bronchial biopsy and lung biopsy by little hole i sertion through neck. Both done on same day. He is taking inhalers now. Did some steroids not for that long like short period. Pls ck what ct scans showed get ur reports. If lung problem go to pulmonary specialist w reports. Sarcoidosis is very fatigue disease, be kind and patient because its frightening to get weird symptoms . Get another opinion. See if u have any dr in area that treat Sarc. Its not a disease they know alot about so anyone with better study of it I'd go to. Be well not sure I answered anything. Prayers to u guys.
shelby92952 dnr77
Posted
Hi thanks for the reply. Yes he has had ct, 3 xrays,he has also seen the ent department as he gets a lot of trouble with his nose. After reading your reply I wish I had asked more about the results of the ct and recent biopsys but at the time your heads all over the place. We also got told this news on our daughters 2nd birthday so I don't think our heads were fully in it. Thank you so much
dnr77 shelby92952
Posted
Hi, don't ever have regrets things get tossed at us and we are not prepared. You can get rrports or copies of ct scan discs too . Anyway its sn odd disease so just take 1 day at a time. Thats the day we are given tomorrow will be tomorrow. God loves you and ur family. I pray his peace for you. His guidance and just trust you will be helped. Jesus cares vèry much. Have a great day. It will be okay. 😇
shelby92952 dnr77
Posted
Thank you so much 😍
zss shelby92952
Posted
Hello Shelby.
First of all, my sincere sympathy to you and your husband for what you are going though right now. I hope they find what is wrong as soon as possible.
From my own experience, Prednisolone does work. I use it for treating Asthma as well as the Sarcoidosis in my lungs.
Treating Sarcoidosis can take some months of high daily amounts Prednisolone. Sometimes it can flare or come back and the therepy regime has to be repeated again until the Sarcoidosis is "dormant" and not spreading.
What I have experienced since the Sarcoid has stopped spreading is a permanently tight chest and shortness of breath. There is no cure for Sarcoid and what damage is done, is permanent. Mine is also exhacerbated by my chronic Asthma.
I go walking every day for exercise, this is important and is recommended by my thoracic specialist.
Prednisolone is the first therepy considered when treating Sarcoidosis. There are other drugs if the patient cannot cope with Prednisolone.
There are side effects with Prednisolone, they should be discussed with your doctors so know what to expect.
shelby92952 zss
Posted
Thank you for the reply. My partners symptoms are very much the same with the tightness etc. Our worry is now there is permanent damage. I have seen a lot of people talk about walking and it's something I will encourage more for my partner. We live up 3 flights of stairs so at the moment our biggest struggle when we go any where is trying to get back up the stairs. The Dr has told us about the symptoms. I feel he has an appetite again but personally I don't think that's a good thing as I know the weight gain can be quite a bit. There's so many un answered questions. Thank you
zss shelby92952
Posted
Hello Shelby, all of the weight gain experienced by taking Prednisolone is due to fluid retention. That includes the alarming looking "moonface", that comes with prolonged heavy use. It's all fluid.
The positive thing is, once the Prednisolone stops, the fluid does drain out very quickly via frequent trips to the toilet. That also includes the moonface. Your husband should be prepared for experiencing pimple eruptions and when the Prednisolone ebbs away, very painful joints like he has arthritis. One of the most annoying side effects is the sleepiness due to the natural cortisol produced by the body, winding back because of the Prednisolone.
The withdrawal side effects can last as long as the period the user was on Prednisolone. Meaning, if the user was on Pred for 6 weeks, it can take around 6 weeks to recover from it after the tapering off has finished. These side effects are the obvious ones.
Since the Sarcoidosis has spread, I have lost my appetite. I can only eat one full meal a day,some days I don't eat a formal meal at all. The rest of the time I "pick" at food when necessary.
Constant fatigue and sleepiness is now my new normal. No matter how much sleep I have, I'm always tired. Sleep is also erratic and scattered throughout the day. That is apparently a symptom.
There is so much information on the Internet about Sarcoidosis and Prednisolone.
InRemission shelby92952
Posted
Hi Shelby92952,
I'm sorry about all of the uncertainty and suffering your husband and family are experiencing.
A correct diagnosis seems to be the most important thing for your husband right now. As far as I know, biopsy is the only definitive way to diagnose Sarcoidosis. If the previous biopsies did not show Sarcoidosis- but they are treating your husband as if he has Sarcoidosis- then I would seek another opinion. Another biopsy may be required, but I would first want to establish more about the first biopsies.... Was the failure to show the Sarcoidosis in the first biopsies due to an error in how the biopsy was taken / analysed? Or, was there in fact no evidence of granulomas in either sample, in which case Sarcoidosis may not be the problem at all...
I agree with the other comments that it would be best to find a Dr who has specific experience with Sarc & seek a second opinion.
Additional tests that can help to support / indicate a diagnosis of Sarcoidosis include - blood test for ACE levels, blood test for calcium levels, xrays & lung function tests. However none of these are enough for a diagnosis as each of these tests can also indicate other illnesses and every person with Sarcoidosis may present their illness differently.
As for prednisone, many of us were treated for long periods before we improved. It is also important to taper off s l o w l y so as not to relapse again as soon as you stop taking it.
It can be hard to speak up & feel any sense of control when faced with such a new and scary situation. I encourage you to read as much as you can & to be as 'pushy' with questions as you need to be... you and your family are the ones who love your husband. No one else will care more than you do.
Best of luck with all of this (((hugs))) t
shelby92952 InRemission
Posted
Hi thanks for your reply. After reading this I wish I had asked all these questions at the time but I think your head is just all over the place you kinda just want out that room. The Dr we are seeing is a specialist in this line and he had been good but I feel there are so many unanswered questions. He had bloods done every day in hospital with high ace levels. He also was told that his liver wasn't functioning correctly which I don't know if it's related. Something we should have probably asked. Your reply was very helpful and I've noted it all down to ask in our next appointment. The Dr explained the open biopsy is a very trick one and cause more damage so we are a bit scared of that happening. It's along time to have no diagnosis and it is a strain on family life but you've just got to keep going. Thank you
DonnieMac shelby92952
Posted
Hi, everyone's treatment will obviously differ but I thnk I can say that there is definitely a degree of uncertainty throughout. As far as the steroids are concerned there are side effects like weight gain, sleeplessness, slight memory loss, mood swings and more. The level of these side effects will differ depending on how long he'll be on them, the dose, etc.
After 7 years on steroids I'm now on Methotrexate and my steroids are slowest being reduced at the moment, (early days to let you now how that's going!).
Hope all goes well.
shelby92952 DonnieMac
Posted
Hi thanks for the reply and I'm so glad yours are being reduced I hope in yourself your feeling better.
The steroids are a scary thought. I've noticed a high gain in appetite so far but that's about it. Saying that it's only been a week. So far no mood swings. I would say he has slight more energy but then that can be a bad thing sometimes as he forgets the lungs aren't doing there job and can be severely out of breath. It's all trial and error and I hope one day he can wake up feeling like him old self. Taking each day at a time. Thank you
gail_24648 shelby92952
Posted
Hi shelby, I am waiting for confirmation that have sarcoidosis, have had ct scan, blood tests, lung function test and biopsies of lungs and lymph glands, I feel bit achy and breathless at times but that's it, this sarcoidosis is a scary thing and seems to affect everyone differently, this site is brilliant for support and advice it has helped me a lot, I think you just have to keep pushing for answers, I have been told that the bronchoscopy and ebus I had last week will give a definite answer, I wish your partner well
shelby92952 gail_24648
Posted
Sorry to hear you are gping through this aswell. I hope it's a quick diagnosis. He's had all these test done but the bronchoscopy unfortunately wasn't showing to much. It's a great site I'm finding it good speaking to people and hearing everyone's story's. Although I'm not going through it myself I am seeing how much it can effect your life and it's good to know other people understand this.
gail_24648 shelby92952
Posted