No Treatment Available for my situtation STILL
Hoping someone might have suggestions on what gives them relief that I might not have tried.
Do to other medical conditions old and new I am unable to use any of the medication available, for the only one I could take I have for many years and ended up becoming "photo allergic" and no longer able to take it.. Fungal infection of the lungs called "Valley Fever" in the past and now Lung Cancer. Unable to use Tylenol, NSAID or Topical Creams right now either.
What I have been using and at times gives relief is: Damp Heat, Ice, Tends Unit, Rest, Stretching and some light exercises. Exercise and stretching right now are pretty tough to do with Radiation and Chemo wearing me out. I am just at a loss and could use some suggestions if you have any please for these mentioned above treatments have the RA is full swing. My Rheumatologist and some of his Peers have no other ideas to try.
, oh my, you are truly in the middle of a tough battle. I am so sorry this is where you are. My suggestion, which may help some with comfort and energy, is to consider acupuncture or gentle massage. Some cancer centers can help with those referrals and may be covered by insurance. I have a medical background, and am somewhat leery of some alternative medicine approaches. I’ve used massage for years and acupuncture for 1 year. I get mine at a major research medical center. I don’t believe those modalities to be curative, but they make my daily life better. Also, not knowing where you are getting your care, I would also consider requesting a referral to a major research medical center. You could get recommendations and come back home to work with your own doctors. I Hope for relief for you soon! Jo Oh I totally forgot about message therapy! Never tried acupuncture but that is NOW on my list, did already call insurance co. and they are all in to help with either at their approved places. Fortunately I have a great cancer team and they are the ones that referred me to the new Rheumatologist, so I believe I will have no problems with either a referral to someone they might be aware of already. I do live with in a couple hours of 2 very well known cancer research centers if needed. Thank you for reopening my mind and thought process, it's been a tough couple years, more so this last one, then the brain fog added to that. I knew if I asked that there would be someone that could help. THANK YOU SO MUCH. Doris
Good Luck!
Hi
. Mind if I ask if the lung cancer is the reason that you cannot use many of the RA medications? I ask because there is a growing body of research that those with cancer can still be treated for autoimmune conditions with biologic medications. Here are some articles on the topic:
https://www.jrheum.org/content/46/11/1438#:~:text=Guidelines%20suggest%20that%20rheumatoid%20arthritis,therapy%20after%20a%20cancer%20diagnosis.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7510630/
https://www.mdanderson.org/cancerwise/rheumatoid-arthritis-and-cancer-treatment-5-insights.h00-159542901.html
The last one is an article from the MD Anderson Cancer Center. Of course, there may be very good reasons particular to your case for why doctors may not want you on biologics, but I want to share the information so you can discuss with them, if you choose. Also, I don't know if I previously mentioned this, but we have a sister-site for lung cancer at https://lungcancer.net/. Wishing you the best. Richard (RheumatoidArthritis.net Team)Thanks for the question! Actually "Valley Fever" is the culprit more so. VF also is Coccidioides infection in the lungs, which is a fungus that is found in dry dessert regions soil and air born. I contracted and was treated while 8 and 9 months pregnant back in 1989 living in Phoenix AZ. It was wicked and then having pulled / stressed abs while delivering a baby was no picnic either. Anyway, having this fungal infection so long ago can still cause 2nd problems if activiated by something else, this is where MANY of the RA meds come in to "play". As for the cancer part, the Chemo Oncologist was hoping to use Immunotherapy for maintenance after the Radiation and Chemo treatments. RA in general from what she says keeps me from having the Immunotherapy, let alone now confirming that Valley Fever is another Road Block with it. My sources that I have passed on to the Doctors, is the Pharm Co Dr. & Pharmacist, Univ of So Cal, Univ of AZ both having a area specificially working with VF. As for today, Thurs, both Dr (RA and Chemo) have had staff confirming and researching for me, so far no luck. I was hoping for relief if they found something, but it appears that RA, VF and LC are not your favorite things to have or had with in ones body 😀 I feel confident they (all doc. including many peers of theirs) will come up with something to treat most of these items they can. I was hoping for a little relief from sympthoms in a safe way. Hope this explains things a little more, if not please ask more questions and I will do my best to answer, I am an open book.
I loved articles that you sent, these are most interesting and hopefully will help if someone be it family, friend or stranger run into these, sharing knowledge is the key for all of us.
Thank you so much!
For 20 years I never found a medication that worked and my rheumatologist was about to give up when he found an obscure biological called Kineret from another disease. It has worked wonders for my RA for 10 years now. Now, of course, everyone’s illness is different and unique and there is absolutely no guarantee what works for one patient will work for another but it’s something to maybe add to our list to look into as it may not have some of the things that you are allergic to/unable to tolerate. Let us know how it goes. In the meantime remember - you are not alone. This disease is extremely frustrating and draining. Keep on keepin
thanks for the shot, took a look and because of this statement it is one I can not use either; "Drugs that affect the immune system by blocking tumor necrosis factor (TNF) have been associated with an increased risk of reactivation of latent tuberculosis
(TB). It is possible that taking drugs such as KINERET that blocks IL-1 increases the risk of TB or other atypical or opportunistic infections. Health care providers
should follow current CDC guidelines both to evaluate for and to treat possible latent tuberculosis infections before initiating therapy with KINERET. "
Great try it is one I had not checked !!!! It does say that it is now used for RA, so some others have found it to be helping too, that's awesome.
Thanks again, Doris
