Experiences with

Sialic acid storage disorders

Having a bad one today. Thunderstorms and wind yesterday, more rain today. Headache and body pain. Took an arthritis Tylenol, magnesium and malic acid and it hasn’t subsided. ☹️. After I’ve had something to eat, I’ll take an Advil. 🤞😶‍🌫️

My PSA after surgery was < 0.02 for 1.5 years and read 0.02 at that point. 1 year later I just got a 0.03. That's pretty certain for BCR unfortunately according to more recent studies. Not a fact PCa patients like to learn about. I know most Urologists & Oncologist typically don't recommend salvage

My husband’s Dr. Mulhall has prescribed him 25 mg of cialis once a week as a way of blood flow to the penis. Wondering if there are any side effects that result from this…already from the positive one hopefully:) Thank you for any input.

Has anyone else had increased heartburn / GERD when using the generic versions of Cialis & Viagra? The brand versions have a type of enteric coating which may make it easier to digest without causing heartburn / GERD since I never had this problem with the brand name pills. The generic versions I receive

Hello all, trying to see if I can get some answers from folks in the trenches instead of winks and nods I get from the docs. Im 55 had prostatectomy in 11/15/23, gleason 9 in one core with a 1mm positive margin. Gleason 7 in two other cores, and disease only in 1/2 of prostate. Had resection in lymphnodes

My husband is getting brachytherapy in September and then IG IMRT in October. He is currently on Orgovyx for month two and will be adding zytega next month. Good news is that his PSA has gone to 2 and Testosterone to 9 after a month on Firmagon so meds seem to be doing what are supposed to. Drs have

Hi all, Was diagnosed in June 2023 with prostate cancer grade 3, gleason 4+3=7, pirads 5, (T2bn0m0) confined to right mid and right apex . No indication of metastasis in both MRI and Pet Scan. Completed IMRT (37 fractions, 70-78gy, with SIB boost to 85-90gy targeting prostate, seminal vesicles and

Severe muscle cramps nighttime in my legs have recently been wrecking my sleep. After reading up, I discovered that pain in legs can be a side effect of tadalafil/ cialis. After quitting, the cramps rapidly receeded and after less than a week no longer appear. I had been taking 5 mg daily for 4-6 months

Hi all - curious if any of you are experiencing pretty intense restless legs? I am a triplet therapy patient and am through the chemo and radiation (maybe quad therapy:)) so wondering if somehow Darolutamide is contributing to this? I also take a statin, a reflux pill, vitamin D, flomax, and cialis

Hello, Im a 61 year old man, IIB, T2c, no mo, classified as unfavorable intermediate. I just finished my last day of 28 days of VMAT, ( total 70gy) ,last Weds day on May 15. Minimal SE so far. I also have 5 months in on ADT , Lupron, 1month, 1month , and 3 month shot. So I was feel pretty good

Tadalafil , etc is prescribed for ED, BPH and PAH (pulmonary arterial hypertension). It is pretty much agreed upon that Tadalafil increases insulin sensitivity thus improving lean body mass, particularly around the gut, improves Testosterone/estrogen relationship and is good for heart and vascular health

Hello everyone! I hope you are doing well. I wanted to post an update about my father's current situation. After PSA started to raise, the MO added Abiraterone 1000 mg. a day with 10 mg prednisolone to his treatment regimen with Zoladex (once every 3 month) and Zoledronic acid (once every month). Abiraterone

DR or Insurance both are not providing PSMA PET SCAN. BONE SCAN RESULT : Narrative EXAM: NM BONE SCAN WHOLE BODY CLINICAL INDICATION: clinical eval. Metastatic prostate cancer. TECHNIQUE: Approximately 2-4 hours following intravenous administration of 27.1 mCi of Tc99m-MDP, whole body delayed

I had a bone density scan in the summer and was told I have osteoporosis. I am 80, I thought I was quite fit but now I'm frightened of falling. My Dr has suggested taking Alendronic Acid tablets. I looked for a support group and came across your website. I've been reading all your stories

Diagnosed GCA September 2022, loss of vision in left eye, prednisolone and Alendronic acid, completed taper by February 2024. Lots of symptoms during the last months but persevered and began to feel better after a few weeks. However this didn’t last and experienced lots of issues - shoulder, arms, hips

Hello all I’ve just had my second laparoscopic endometriosis surgery. First was 15 years ago and said mild endometriosis. This one found significant moderate-severe endometriosis in 3 different locations which they’ve removed (unsure if they feel they got it all). I’ve also had a scan showing adenomyosis

I have had PMR for 3yrs and had a couple of flares. Gradually got down to 5mg. Have done some yoga and gentle circuit training. (Due to bone condition)Walking has been no problem. My arms have started to ache have been for the last month and just accepted it. Have now got a chest infection. Should

Why: We know that leriglitazone/MIN-102 is effective at slowing the progression of AMN and greatly reducing the risk of cerebral involvement, but unless I'm missing something, it's not available to me here in the US currently. But its prodrug, pioglitazone, is, and given that leriglitazone is one of

Hi All, I recently started Dienogest 3 days I am Having flu like symptoms, sore throat feverish with cramps and Diarrhoea. My bloating has gone miles down. Currently on 30 days bleeding stopped taking Tranexamic acid as it’s not heavy anymore. My question is did anyone experience these side effects?

Hey Up! Had an MRI and DEXA scan. Found I have 4 vertebra with compression fractures. Diagnosed with Osteoporosis by Dr Stephen Orme at Leeds Spire and Nuffield Hospital. Been told to reduce alcohol to 14 units per week (normal NHS guidelines), increase calcium in my diet, take 1000 IU of Vitamin D